(As an ironic side note, I talked about goiters as being one of the visible manifestations of thyroid disease, but said I’d likely never have one. Fast-forward a few years on from that piece, and I did! It’s mostly gone now, back to being invisible to the human eye.)

There’s a certain amount of privilege in being able to “pass” for healthy and able-bodied, a privilege not afforded people with more visible disabilities. Nobody stops me in the street to ask what’s wrong with me, nobody stares when I get on the bus or go about my day. When my voice changed from spasmodic dysphonia, it was suddenly the most “visible” (technically audible) disability I had, but it was also the least difficult to manage. My voice doesn’t cause me pain or fatigue or brain fog or nausea. My other illnesses do.

I think that’s why I was so struck when I first saw the embroidery art of Lia Pas. The first piece I saw was an illustration of the trachea and bronchi, delicate white threads in an anatomical design while red thread spelled out poetry along the branches of the lungs. It was so beautiful and precise, a perfect combination of science and art.

The Slowest Thread

People

More videopoems this week along with full embroidery pieces. You can see Weeks One: Lands, Two: Species, and Three: Water linked here and below…

Read more

8 months ago · 10 likes · Lia Pas

I want to talk to her, was my first thought. I want to hear about how she makes these creations.

Lia was generous enough to spend some of her energy allotment on a video call with me, and from there we decided to host a workshop together. She would teach a short session on art and visualization, and I’d share a poetry exercise to help condense our words about symptoms in the most visceral way possible. We decided to call it “Seeing Symptoms.”

Share

Though it’s taken months to plan, we always hoped to hold the event in May as part of ME Awareness month. Myalgic encephalomyelitis, sometimes called “chronic fatigue syndrome,” continues to be a poorly-understood condition with few resources available to those living with it. The hallmark of ME is a symptom called “post-exertional malaise” (PEM), which is when your body is even more depleted, and symptoms worsen, after most basic daily activities — showering, cooking, even eating. The disease is thought to affect somewhere between 15-30 million people worldwide, and it can often result in being homebound or entirely bed bound. One of the most striking graphics I’ve seen about the disease shows the quality of life with ME compared to living with other illnesses (including cancer).

The data for this chart comes from a paper by Michael Falk Hvidberg et. al., “The Health-Related Quality of Life for Patients with ME/CFS.”

Lia has ME, along with a handful of other diagnoses, and her embroidery art helped her make sense of her symptoms, in the same way that my writing allowed me to come to terms with my illnesses. And as it so happens, May is also Arthritis Awareness Month, which is in my wheelhouse.

So I’m excited to share that we’ll be hosting this virtual, free event Thursday May 28 at 12pmPST/1pmMST/2pmCST/3pmEST. You can sign up at the link here. You’ll need pen and paper and whatever other art supplies you’d like, plus anatomical prints, which can be downloaded for free from Wikimedia (because Gray’s Anatomy plates are in the public domain).

I hope we’ll see some of you there!

I didn’t love everything I read, but I learned from all of it. The words of other chronically ill and disabled writers helped shape my own thoughts about illness. It felt as though we were in conversation with each other, even if I never actually spoke with them. (Don’t worry, I’ll leave a list of some favorites at the end.)

My book is out now, no more research required, but I’m still trying to stay on top of the other books on similar subjects. I can’t help but imagine there are still many more to come in this burgeoning genre of living with illness, seeing as the rates of chronic illness are increasing, including among young people, and millions of people have developed Long COVID since the start of the pandemic in 2020.

And I want to see those stories! I want to read more of them! In part because illness is as much a part of life as falling in love or having children, and in part because illness and disability illuminate dozens of intersectional fault lines. They tell us so much about whose bodies matter in our society, whose rights we fight to uphold, who we’re willing to provide with care and attention.

And so when I learned about Lena Dunham’s new book Famesick, I knew I’d have to read it, too.

I should start with some caveats: I’ve never followed Lena Dunham’s work very closely. I don’t know that I’ve even seen a full episode of her HBO show “Girls,” though I was aware of it being on while I was living in New York, around the same age as the characters. I knew Lena Dunham was a big new name in media circles, and I remember watching the rise of her newsletter “Lenny Letter,” way before everyone was on Substack or Ghost or BeeHiiv (honestly it was before any of these even existed). I knew she talked about having endometriosis when that was still somewhat taboo, and I knew that she’d had some other health problems.

But I don’t follow celebrity news or gossip columns, and I don’t watch all that much TV, and I was very snooty and condescending about a lot of the new internet media companies, all your Buzzfeeds and Bustles and Gawkers and what-have-you. Not that I’m proud of this attitude; there was plenty of good writing and reporting at digital-only publications. I was still going through my elite media yearning phase.

All this to say, celebrity memoirs are not a genre I normally read, and the main reason I picked this one up was because a friend offered to send me her copy. And, as previously mentioned, reading stories of illness has become something of my expertise.

So I’m sorry to say, I didn’t like this one very much.

I do think Dunham has an interesting perspective on the ways fame itself becomes a sickness, especially when you’re a young woman talking about subjects like sex, especially when social media allows rumors and trolling to spread like wildfire. She recounts the early days of her sudden rise of fame with a lot of self-awareness and candidness, with no effort to sterilize her own actions or behaviors for the sake of making herself look better. To suddenly have access to the titans of Hollywood, and the media at large, sounds like a very potent drug that would intoxicate most anyone and disorient you in a way I can’t quite imagine.

She was in her early 20s when she started working on “Girls,” which means she wasn’t in the child-actor category of abuses, but she still didn’t have the knowledge and autonomy to really defend herself from what people asked of her. And when you suddenly find yourself in such a position of success, how could you think to ask for more? Especially if you don’t feel like you deserve it in the first place.

These are the subjects on which I think Dunham is at her strongest, but again, because I’m not a celebrity memoir person, I mostly found them uninteresting. They’re important topics in our fame-obsessed culture, and they’re not one of the things I spend all that much time thinking about. But if that’s something you do like thinking about or reading about, you’ll probably enjoy it a lot more!

The real critique I have for this book is the way she talks about her experience of illness. Dunham powers through terrible pain for the sake of her work, which is likely to resonate with many disabled and chronically ill readers. The world constantly asks us to smooth down the rough edges of life, to conform to ableist standards of what one should be able to do at a given age, in a given body. Dunham undergoes multiple surgeries for endometriosis, sustains at least one serious injury on-set and works through it, and is often pushed back to work within days of major procedures.

[Side note: If you’re under general anesthesia for anything, even a little 20-minute operation, the doctors and nurses repeatedly remind you that you shouldn’t sign any contracts, make any important decisions, etc. for at least 24 hours. Because those drugs mess with your brain!]

Some doctors treat her horrendously (relatable), and her relationships suffer under the weight of managing all her ailments. Again, very relatable! I felt for her, because I know what that experience can be like.

Share

But the part that really irked me is that she doesn’t show much interest in the structures that allowed her access to care when so many people have to fight so much harder for it. Dunham has multiple surgeries done by a leading expert on endometriosis, and is able to schedule many of them in the span of days. This is not how this kind of elective surgery almost ever works! Unless you are literally at risk of dying (which is rarely the case with endometriosis), your surgery is often scheduled months out. If you’re lucky, your doctor will give you drugs to help manage the pain while you wait.

What’s more, there’s never any mention of the cost of her weeks-long hospital stays, or fears about going into massive amounts of medical debt, or any of the concerns that plague most of the “common folk.” When I started having health problems, we would get calls from debt collectors about repossessing a car we didn’t own. And I didn’t even have that many bills at first! I had insurance, I had a job, as did my partner. But for a while, that wasn’t enough.

I understand that for the genre of memoir, an individual is writing about their own experience. Dunham does this very well; she’s a good writer. But the lack of interest in the world outside her sphere bothered me. For someone who became something of an advocate for women’s health, she doesn’t go very deep into any of the intersectional issues women face in navigating illness.

When I read books, I try to judge them on their own merit rather than building a fantasy of what they might have been. I realize I’m demanding something of Dunham that she didn’t seem interested in writing, and that’s an unfair expectation. But I can’t help wishing she’d looked around a little more. Rather than saying, “It’s hard for us even on the very top of the social hierarchy!” I wish she’d said, “Who is getting left behind?” I wish she’d considered some of the bigger issues around who gets to tell their stories of illness and trauma, and whose voices are never heard. Maybe what I’m saying is that I wish she hadn’t been so famesick, and could understand and reflect more on the experience of simply being sick.

Some Favorite Reads on Illness

• How to Tell When We Will Die: On Pain, Disability, and Doom, Joanna Hedva: This book is a beautiful essay collection that made me think, broke my heart, and taught me so much about physical and mental illness, kink, art, and grief

• Disability Visibility and Disability Intimacy, ed. Alice Wong: Both of these anthologies collect the writings of chronically ill and disabled people, engaging with the world around them. I especially loved Disability Intimacy, but both are wonderful.

• Moving Mountains: Writing Nature Through Illness and Disability, ed. Louise Kenward: Another beautiful anthology where writers share their experience with nature and the environment through the lens of illness. This one was a big inspiration for my book!

• Disabled Ecologies: Lessons from a Wounded Desert, Sunaura Taylor: Another book that was a huge influence on mine, this one is slightly more academic but is in no way dense or jargon-y. Taylor tells the story of polluted aquifers around Tucson, her own experience of disability, and the ways that environmental and human health overlap profoundly.

• The Cancer Journals, Audre Lorde: A classic for a reason. Lorde recounts her experience of breast cancer with rage and pain and tenderness, and looks out at the world as well as to her own personal suffering.

And if you have favorites of your own, please share in the comments! I’ve only listed a small number of the dozens of books I’ve read on these subjects, but I’m always looking to expand my reading.

Upcoming Chicago Event!

I’m so excited to be teaching a class at one of my favorite indie bookstores in the city, Skunk Cabbage Books. I’ll be talking about using nature to help us write about the body, whether that takes the form of illness, disability, spirituality, or anything else. The class is on Tuesday May 26, 6:30-8:00pm. You can register for it here! Space is limited, so sign up if you want to come.

Author Andy Weir, who wrote the book that the movie is based on, has been dragged a fair amount recently because of an interview he gave back in 2018 when he said, “I put no politics or social commentary into my stories at all.” It feels a little unfair that people are kicking the quote around the internet, given he said this eight years ago. For all we know, his opinion might be totally different now.

At the same time, they’re rightfully pointing out that the very premise of works like “Project Hail Mary” are political; can you imagine world governments coming together to do just about anything right now? Would love to see it. Instead of being in the “Project Hail Mary” world, where governments agree to put resources towards saving the planet, we’re in more of a “Don’t Look Up” situation. This 2021 movie was about a deadly asteroid barreling toward the planet, and rather than act, leaders tell everyone to ignore it. Just pretend the impending death and destruction won’t actually happen.

I’ll give Weir this; I had a lot more fun watching “Project Hail Mary” than “Don’t Look Up.” I couldn’t even get through the latter because it felt too close to home as someone who’s reported on climate change and natural disasters. I want to believe that world leaders will collaborate on existential threats but the evidence so far suggests otherwise. Instead, we the little people have to do it ourselves.

I know, I know, this is what every organizer and activist under the sun has said in a hundred different ways: we the people have more power than we think when we band together in communities, and working together is one of the few reliable methods of creating change.

I’ve been thinking about this for a couple reasons. First, putting a book into the world via an independent publisher, like Beacon Press, shows the incredible ability of a small team to produce great books. As a peak behind the curtain, I can say that I’ve worked directly with a two-person marketing team, a two-person publicity team, my editor and editorial assistant, and a handful of others who have popped in and out. It’s been wonderful to have their support and expertise as I wade into the 2026 landscape of book publication. I want to believe that this small group of people can help me find readers who will resonate with the message I’m trying to share, and that in turn might inspire more people to get involved with environmental protection and disability justice.

At the same time, it feels terrifying as an author to sit around in the aftermath of book publication waiting for more things to happen—or worse, deciding what to try. My team has been amazing about helping me organize a book tour (some dates below!) and get in touch with media outlets and publish excerpts of the book or related essays. But media visibility doesn’t necessarily lead to sales. Consider the Lindy West situation. If you’ve managed to avoid the media discourse around her, West came out with a book called Adult Braces at the beginning of March and it caused a flurry of debate around polyamory, feminism, and the art of memoir.

I’m not going to get into that here — I haven’t read the book — but even with all the buzz her book generated, and the level of celebrity she already had as a millennial feminist icon, she’s only sold about 3,000 copies so far.

Share

Those are good numbers, to be clear! They’re just not what many people may have expected. But the reality is, most books don’t sell well. Most books barely sell at all. Almost 15% of books by a Big Five publisher in 2022 sold 12 or fewer copies. Publishing industry expert Jane Friedman wrote about this recently on her blog, as well as the fact that true sales numbers are very hard to find. Her general conclusion was that an author should never feel guilty for what their sales actually are. Unless you’re a true celebrity, most people won’t find your book, and they won’t go looking for it. This is why having a built-in audience through social media is so helpful.

It will likely come as no surprise that I am not looking to be an influencer. I’m posting more regularly on Instagram, and I might be convinced to make some TikTok videos, but I don’t want that to take up more than 10% of my time. And so instead of relying on celebrity status or my social media profile, I have to hope and trust that my small team of supporters will get my book to the people who need to see it, and that it will build its momentum from there.

(I do not like this uncertainty!!! But as another chronically ill writer friend pointed out, the more we stress about our books, the more our bodies bear the brunt of it. So I’m doing my very, very best to do the work I can, and hope for good things to come.)

The other really heartening example of small groups spurring change is the Care Not Covid organization who’ve been working on getting a “right to mask” bill passed in Illinois. I wrote about this last summer, in an interview with organizer Megan E. Doherty (she’s also the photographer who did my headshots for the book!)

This week, the group announced that “The Protective Medical Equipment Freedom Act — Kiki’s Bill” passed out of the Illinois Senate and is now headed to the House. There’s still a little ways to go before this becomes law; it starts in a House committee, then will hopefully pass to the House floor for a debate. The group is asking anyone who’s in Illinois to sign up for potential calls with state representatives here.

Even though there’s still more work to be done, what’s incredible to me is that a small group of people with no experience in legislature or government decided they wanted to do something in the face of anti-masking bills being debated elsewhere in the country. So they talked, and found people with a little more expertise on this process, and created a group that would actually try to get this idea turned into something that’s part of the Illinois legal system.

It’s an amazing reminder that being passionate about something, connecting with other people, and then doing the work to make change — sometimes it brings the outcomes we hope for. Not always, and it’s a slow, steady, grind. But we can create a future that will be better for the most vulnerable. We don’t have to look away from problems and hope someone else will take care of them. A movement can build momentum, even in the face of a fascist federal government.

Let’s bring it back around to “Project Hail Mary” to wrap things up. I’m glad our sun isn’t dying and we don’t have to face an imminent apocalypse of that kind, but sometimes I wish we had the more straightforward “ONE BIG PROBLEM” instead of dozens of big, ongoing ones (war in Iran, ongoing genocides in Gaza and Sudan, destruction of the EPA and science at large in the US, measles outbreaks, millions of unnecessary deaths due to USAID funding cuts, AI slop taking over the internet and rotting people’s minds, worsening effects of climate change, etc. etc.)

It seems like it would be easier to tackle an asteroid or some other near-term extinction event than it would be to handle the plethora of problems we face as humans. In reality, I don’t know what would happen if there were an asteroid of the dinosaur-killing variety hurtling toward Earth. Maybe we would all just ignore it and then die. But I think the political aspect of “Project Hail Mary” I like the most is that a bunch of people do get together to solve a significant problem. They gamble a lot of resources on it, and in the end, it works. And the person responsible for saving humanity is a middle school teacher whose curiosity and compassion brought him through some really significant challenges to find the solution Earth needed.

It’s a fairy tale ending for a sci-fi story, but I think what we often need is a reminder that dogged perseverance can, sometimes, bring positive change.

BODY WEATHER IN THE WORLD

May Events

• Writing Nature and the Body: A writing class at Skunk Cabbage Books, Tues. May 26, 6:30-8pm CST

  • Chicago-area friends, join me for a night of exploring how we can incorporate storytelling techniques when talking about our bodies and our environments. We’ll read some great work, do some fun exercises, and hopefully you’ll come away with fun new ideas for your own writing practice. RSVP at the link above

• Seeing Symptoms: An Art and Poetry Workshop with Lia Pas and Lorraine Boissoneault, Thursday. May 28 online

  • This one is still in the works, so I don’t have a registration link yet, but if you want to have fun exploring symptomatology with me and artist Lia Pas, keep this one on your calendars!

June Events

• Reading & Discussion at Lost City Books, D.C., Sun. June 7 at 7pm EST

  • Join me and science writer Helen Fields for a discussion of “Body Weather” at a great indie bookstore in Washington, D.C. RSVP at the link above

• Reading & Discussion at Books Are Magic, Brooklyn, Mon. June 8 at 7pm EST

  • I’ll be in conversation with writer Darcey Steinke to talk about my book and writing on pain and the body. Her book This is the Door: The Body, Pain, and Faith is a truly beautiful exploration of how we try to make sense of, and survive, living with pain. Register at the link above

• Reading & Discussion at Porter Square Books, Cambridge, Fri. June 12 at 7pm EST

  • Here I’ll be talking to author and game designer Lizzie Stark about “Body Weather” and her work in journalism. RSVP at the link above

• Reading & Discussion at Third Place Books Ravenna, Seattle, Tues. June 30 at 7pmPST

  • I’ll read, then me and climate journalist Ashley Braun will have a discussion about the book and reporting on climate. Link to the event forthcoming

Stay tuned for more! I’ll keep posting updates about events and other activities here.

I’ve had a lot of injections into a lot of joints, including the sacral-iliac, which is a wee bit lower on the back, but importantly, not around the spinal column. Something about knowing how close that needle will be getting to important nerves is a little alarming. Which is why the procedure was done in a surgery center (even though it’s not surgery)—the doctor uses an imaging machine to make sure the needle goes in juuuuust right.

I’ve had back pain related to my arthritis for years, but the addition of nerve pain is something else. Yes, it hurts, but also, I get weird bursts of heat down my thigh (first time this happened I thought I’d inadvertently peed myself) and a cool sensation over the top of my foot, like a breeze (except I was wearing socks, and the windows were closed). Neither of those sensations are unpleasant, but they are … disconcerting. I guess the nervous system does dictate how we experience the world.

Anyway, there I was sitting in my hospital gown waiting for the doctor to come in, listening to the woman beside me who had just woken up from a procedure and was whimpering in pain. And then a man a few curtains down who was also in for surgery and explained that he only got about three hours of sleep per night because the pain kept him awake. And then my doctor came in to talk about what she’d be doing, and found out I had a book coming out literally the next day and spent the whole ten minutes of the procedure asking me questions about how that works.

“I wrote a chapter in a book once. Hardest thing I’ve ever done,” she said as she slid a needle into my spine.

“Well my job is writer and your job is doctor, soooo,” was my response, trying to imply that no one should ever allow me near anyone else’s body with so much as a stethoscope, let alone an epidural needle.

Injections done, I got wheeled out of the OR and back to my “room,” then walked out on my own two feet with nothing but a sore back and a leg that was tingling a lot.

The next day, I once again drove to a doctor’s office, this time my gastroenterologist, to talk about some annoying symptoms that have been happening for a couple months. It was the same rigamarole of waiting rooms, overhearing other people talk about bowel movements and stool samples, getting weighed and blood-pressure-monitored and told to get a bunch of lab work done and come back in a month.

Then I drove to the indie bookstore that’s hosting my launch party on Friday, Women & Children First, and signed a bunch of pre-order copies for them. Because my book was officially OUT IN THE WORLD and I had a slew of readings and promo events coming up.

It’s a strange mixture of feelings to have a book come out that’s all about chronic illness while also still having to manage the day-to-day health chores that are part of living with said illnesses. It’s a lot easier to talk about that experience in a book-length piece than in casual calls or texts with friends.

Yes, I’m so excited about the publication, and grateful for all the people who have ordered the book, and I LOVE getting pictures of it out in the wild, at bookstores or in people’s homes after it gets delivered. And also, I feel a lot of grief for the people I see and hear from who live with pain and fatigue and nausea and all the other symptoms that can make life hard.

One of the people I wanted to interview for my book was an endometriosis advocate named Jenneh Rishe. We’d connected a dozen times or so on Instagram, and had plans to do a video call, but she ended up being too sick with one of her other conditions for the interview. So instead I mentioned the work she’d done in my book, just a line to let her and others know how important it had been to me. She died last week after spending years struggling with autoimmune diseases. She was just a few years older than me.

Share

And I already wrote about disability advocate Alice Wong, who died at the end of 2025, and whose work had such an impact on the ways I think about disability and community.

It’s so hard to see these deaths, to know that so many in the disability community don’t have terminal illnesses, but still die too young, either because of disease progression, or from side effects of treatments, or from medical neglect.

The thing about writing a book is that once it’s published, it’s a static document. Sometimes people write updated editions for more academic nonfiction, but I doubt that will ever happen with Body Weather. The reality is wrote about in the book is different from the one I’m now living. This is true of any book, but it feels especially poignant when the changes are things you experience in your body, and the deaths of people in your community.

I don’t mean for this to be a total downer. Believe me, I am thrilled people will finally get to read this book. I’m so excited to see the journey it goes on. I’ve already done one podcast interview about it, and wrote a related piece for Slate, and there are more things of that nature coming out in the next few weeks. I’m proud of my work, enormously grateful to all the teachers and mentors who have helped along the way, and honored to be among the authors published by Beacon Press.

And also, I’m still sick.

• If you want to hear me talk about chronic illness and the book with arthritis advocate and OT Cheryl Crow, you can find her podcast here!

• I wrote about one of my diagnoses that doesn’t appear in the book, because I was still figuring out how I felt about it. As it so happens, it’s very similar to something RFK Jr has also been diagnosed with. WHICH ISN’T GREAT. So I talked about that for Slate.

UPCOMING EVENTS

• Chicago Launch Party at Women & Children First, Fri. April 24 at 7pm

• DC Reading and Discussion at Lost City Books, Sun. June 7

• NYC Reading and Discussion at Books are Magic, Mon. June 8

• Boston Reading and Discussion at Porter Square Books, Fr. June 12

I’ll provide more links and updates for these events as they go up

**If you want to support the book, you can order it from your local bookstore or request it at your library. And consider leaving a review on Amazon or Goodreads—it really helps other readers find it!!

When I tell you I went to the shelter, you can probably predict how this story ended. Reader, we adopted two cats.

Introducing Miel (his name is French for “honey” because he’s a big sweetie when he’s not being a chaos goblin) and Souris (her name is French for “mouse” because she’s teeny tiny; we thought she might still be growing, but after a month, can confirm that the only growth happening is her belly—the girl LOVES FOOD).

We’d decided a while ago that when we adopted cats, we’d get two, so they would have a buddy whenever we went away for a weekend or so. Did we do any research into the best way of pairing them up? Of course not. Did we adopt an already bonded pair? Also no.

The hijinks that ensued can only be described as epically disastrous. Picture something akin to the weird ‘90s movie called “MouseHunt,” in which two brothers inherit a mansion that happens to be presided over by a supernaturally smart mouse who constantly thwarts their attempts to evict him. Our new cats were not going to follow our rules.

To start with, you’re meant to keep new cats in separate spaces for a while, as they adjust to their new owners and environment. Then, you slowly introduce them to each other’s smell, then you let them see each other through a gate, then you have very gradual encounters that end the moment either of them gets agitated.

To be fair, we did our very best. We kept Miel in our TV room, which can be closed up by doors, and Souris got the front room and dining room. When we graduated to letting them see each other, we discovered Miel could jump over the gates and Souris could squeeze through them.

Share

We bought taller gates with narrower gaps between the bars.

Miel jumped five-and-a-half feet up and Souris nearly strangled herself trying to squish her head through the bars.

We added dowel rods to the top and across the bottom, creating more height and a lattice the stop Souris from squeezing through. She was no longer able to make the journey, but Miel still jumped over it, nearly giving us a heart attack at the thought that he might gouge his belly open on the poles.

The trouble was, Miel came from a house with many other cats and desperately wanted Souris to be his best friend. Souris, on the other hand, became obsessed with me, and whenever I spent time in a different room with Miel, she was desperate to get in there.

To make a long story short, those first few weeks were very stressful. It was like our two cats were speaking different dialects: Miel was full of energy and wanted to wrestle with Souris. She, on the other hand, wanted to roll around like an eel and cuddle next to the humans, and very much did not appreciate being jumped on by some strange dude twice her size, even if it was meant to be playful.

We watched videos online. We bought toys and treats. (So many toys.) We even set up a consultation with a cat behavior specialist to advise us on the best way to get two happy felines.

And while we’re not totally there yet … all the hard work is paying off. Miel now grooms Souris several times and day, and she mostly lets him. She has learned to set her boundaries and throw him like Sandra Bullock wrestling her coworker in “Miss Congeniality.” They eat meals together, and stare out the windows together, and most afternoons they undertake an “explore the house together” trip. They’re not quite besties yet, but they’re on their way.

What does any of this have to do with a book coming out? The most obvious answer is that it’s a distraction from the pre-publication jitters. I now spend a significant portion of my day adjudicating fights, vacuuming litter and cat hair, and playing with both of them using the aforementioned plethora of toys.

(Miel also demands to cuddle with me for his afternoon naps.)

But the less obvious way that this is related to book publishing is the level of uncertainty and frantic energy involved in both endeavors. Adopting any animal from the shelter comes with risk. You don’t know what how they’ll respond to you, or what kind of baggage they come with. When you adopt two, you contend with the possibility that your fur balls might not get along. You do your best to help them adapt, but they’re little creatures with their own pasts, their own feelings and preferences.

As much as it’s exciting to publish a book, it’s also really scary. The author has their own history with the story, even when it’s not also partly memoir, like mine. You’ve spent years with your words, trying to craft something that other people will resonate with. And when it’s finally time to let it go into the world, you give up any control you once had over it. Now’s the time for other people to come up with their feelings and preferences. At the same time, you’re frantically urging people to buy and review, to request the book at their library, to attend events and spread the word among friends! You’re simultaneously aware that you have almost no control over what happens and that you should be working hard to get the book out there.

I’m scared my two cats might only ever tolerate each other instead of being friends. I’m scared my book will reach a tiny number of readers and then disappear. I’m scared my little Souris will come to resent living with the big Miel. I’m scared that the very people I think of as my target audience will find fault with what I wrote.

I don’t have a solution to these worries. But they make me think of the narrator in Marguerite Yourcenar’s novel Alexis ou le traité du vain combat, in which a young musician writes a long letter to his wife. At one point he says:

“As a child, I desired glory. At that age, we want glory the way we want love: we need others to reveal ourselves to us. I’m not saying ambition is a useless vice; it can serve to whip the soul to action…. But I often thought, with sadness, that a truly beautiful soul would never achieve glory, because that person wouldn’t desire it. That idea disabused me of seeking glory and also disabused me of the concept of genius. I often thought that genius is nothing but a certain eloquence, a noisy gift for expression. Even if I were Chopin, Mozart, or Pergolesi, I might feel the same way each day as does a village musician who has played his best with all humility. I’d just have to do my best.” — Marguerite Yourcenar, trans. by me

It’s a beautiful way of saying that we can all only do our best, whatever our circumstances or levels of fame might be. I’ve been as frantic in planning events and writing op-eds and other essays as I have been in herding my cats, but at the end of the day, all I can do is my best. The rest is in the hands of the universe.

(But hey, if you want to tip the scales of the universe in my favor, maybe you’ll consider pre-ordering a copy of Body Weather, requesting it from your local library, or attending one of my events. First up, I’ll be in Chicago at Women and Children First for a launch event on Friday April 24 at 7pm. You can register for the free event here.)

In the meantime, I leave you with Miel and Souris still trying to figure out how to share window access.

The interview was edited for clarity and length.

The Challenges of Writing Illness

Lorraine: From the beginning of the book you have sea creatures and the story of your body very tightly intertwined. I’m curious if in the writing process one came before the other, or if they were always part of the same story?

Eiren: I did everything I possibly could to not write about my own body. I spent five extremely stubborn years as an only child/Taurus convincing myself that I could avoid it. Because, and I think I say this frequently but it remains true, I’d rather talk about fish than about anything else.

The concept of the book started when I had an ongoing column for about a year where I was tasked with writing about environmental spirituality. I ended up writing a lot about what it was like to be emotionally engaged and invested in teaching natural history and naturalist skills to my kid while the world was collapsing. At the time I would really go deep into thinking about the creatures we were encountering. So I got the title for the book and the idea where each chapter would be an animal, that it would be a modern version of a bestiary, very early.

I had been a musician for ten years at that point and had written a number of albums, all of which were very embodied, very much about the physical experience of my illness, but didn’t dive into naming it or talking about it straight on. I think that that is evidence of just how deep my own ableism runs because I had come from this family that had a 150 year history of having this genetic illness show up and people dying before they hit 50 and it was the fabric of our entire existence. Yet we were never public about it because there was a real terror of what would happen happen to us financially and in terms of job prospects and marriage prospects if people understood what was going on privately behind the scenes. So I very much internalized that.

I have an illness where I can pass. The only sign really that I have kidney disease is that my kidneys are six times their normal size so my belly is very big. But I’m also middle aged, so that wouldn’t necessarily track as anything. So because we can pass, we did pass. And because I passed in all these other aspects of my life, I also was, in retrospect, very much passing as a writer. I got fairly deep into conceptualizing the book before I realized, Oh the reason that I’m so interested in the lives of these vulnerable animals—I mean they’re cool and I like fish—but also the other reason is that I identify with their vulnerability in a world that’s collapsing around them. I identify with the way in which the larger forces in our culture in this country ignore or sideline or diminish their worth and dignity.

The minute I realized, oh Jesus I’m missing a huge part of my own psychology in ignoring this aspect and not writing the body, I can’t actually write the book without writing it, I started working through it and came up with the basic concepts that went into the first essay. Then I really spent a long time, and will spend the rest of my career, confronting what parts of my story are intertwined with that internalized ableism and with the ableism of the culture writ large, both as it pertains to me and my body and my family, but also the way in which that sensibility means that we can dismiss and diminish non-human or more-than-human bodies. They all go in the same category together.

Lorraine: That’s fascinating and I wonder how many writers have had similar experiences, because when I was sitting down to write my book, it was not going to be about me either.

Eiren: It’s actually very wise as an instinct within this culture because we have no socialized medicine, we have no protections that consider healthcare a human right and we are a capitalist culture that insists on your productivity and worth being a defining factor of whether you are allowed to exist. So if you are faced with that and you have the capacity to be like, no I’m fine, I can go to work today, it’s logical to make that leap.

Disability justice culture and the beautiful writers and warriors within it really are positing something that’s such a sea change in the way that we regard ourselves and illness and the body and disability. I was always onboard with it, but I think about the vulnerability it takes to say, “I also live in a disabled body and I’m going to be transparent about that.” I’m going to have to get right with it within myself so that when I come to conversations about it, I’m bringing something that is, if not a healed body, a healed relationship to the body. Which I think requires there being exterior work while you’re doing the work of crafting a book that talks about it. Those are two separate things. As an artist, because I couldn’t do my art without confronting it, I had to be able to think on those two planes at the same time.

The Link Between Eugenics & Ecological Collapse

Lorraine: You talked about this a little bit but it leads into the next question well, which are the links between eugenics and ecological collapse. What are your thoughts on how those two things come together?

Eiren: It’s so rich. If I had three lifetimes I would go back and do a PhD on the history of eugenics in this country. I ignored my body and health issues in a public way for a long time, but when I was in college, right after I got diagnosed with my disease, I was 22, 23, I can’t remember. It was the year before my senior year of college that I got diagnosed, I went back to school in Seattle to finish a thesis for the honors program. I hadn’t chosen a topic yet and I was reading this amazing book called Daughter of Earth by Agnes Smedley, which I think everybody should read. But she was a really interesting activist writing an autobiography in the 1920s, hung out with Margaret Sanger, fascinating person. But what kept coming up for me in the reading was the way that class and the body went together.

Because I had this experience of the way that my father’s illness kept us in poverty. We had to pay so much for his care, his loss of work. It really resonated. And in doing the research for the thesis I wrote, I just kept coming across eugenics and the eugenics movement and the way those concepts were showing up in the way that she, writing in 1928-29, was talking about how the culture viewed her moments of physical vulnerability. She was not somebody who was strictly writing about illness, but she was writing about the body and class and there was no way to extricate my understanding of what it was to be an American regarding the body and class without talking about and thinking about eugenics.

One of the most salient moments of recognizing how much I was up against in terms of healing my relationship to my disease was when I was in my 20s, I’d finally gotten health insurance, I had been diagnosed years before, but I went to my first nephrologist’s appointment in the city. I sat down with this doctor and after the initial exam, he asked me, “Do you want to have children?” And I said, “Yes,” I thought I would like to have children. It’s always been something I’ve wanted. And he said, “I know how to end PKD in one generation.” And I said, “How?” And he said, “People like you should never have children.”

So that moment of, oh the entire system including the medical system has this bias toward my body not existing because it’s troublesome, because it’s difficult, because it’s expensive was so apparent in that moment that the reading I’d done about eugenics was just there in the room with me.

State fairs used to have ‘fitter families’ contests. People used to go and get medals based on their genetic fitness and rightness. It’s something we exported to Germany. The moments where I’m like, oh it’s just me and my little disability over here, I try to remind myself how deeply part of our capitalist culture our relationship to illness is.

And also how much of a teaching tool that is to me as a writer when I think about what other kinds of bodies are expendable. If the peak body is the healthy white man, and that’s what eugenics is making us all bow down to, every other embodiment “below” that by eugenics standards, is expendable, disposable. The expandability of that is so evident when you start looking at questions of conservation. The calculus that’s made about whether we provide healthcare to the most vulnerable and whether it’s ok to let them die is exactly the same calculus we use when we think, well the runoff from this factory is only going to be affecting plankton, who cares about plankton, we don’t even eat plankton.

That sense of, if it’s not useful to me I don’t need to protect it, the lack of curiosity and the ability to dismiss other experiences than the most “fit” is really fascinating and I think those two things are inextricable in the way that our mindset goes back, over and over again, to questions of worth when we think of what kinds of decisions do we make about protection and vulnerability.

Lorraine: Yeah, I was reading an article this morning about a long-term effort by conservative consultants to undo the Endangered Species Act, and I was thinking it’s exactly that, the question of where we want to put our resources. These animals are “useless,” it’s too much to spend on them, to protect them. Why does it even matter?

Eiren: It’s very intense to have published a book that came out two weeks before the election, which is essentially focused on this moment in 1971-72 when laws are changing about waterways, endangered species, animals generally. There’s such an incredible change at the moment when we go from not having an Endangered Species Act, not having a Clean Air And Water Act—to having those.

And that’s actually the exact same moment that the United States was reckoning with the fact that dialysis was available but it was rationed. The whole Republican nonsense about ‘death panels’ missed the fact that there actually were, technically death panels in the 1960s for people’s access to dialysis treatment within hospitals. They were formed of average citizens who would come in and review all the files of people who needed dialysis and decide who was going to get it based on a set of rubrics about how many people they were supporting, whether they were male or female, their age, other health vulnerabilities.

Share

It’s a eugenics panel and it was there to ration lifesaving healthcare rather than expand the amount of healthcare to meet the needs of the population. And this was exposed in a bunch of reporting in the ‘60s. It was such a scandal it ended up being one of the biggest health journalism stories of the decade and it led to a person actually dialyzing on the floor of Congress to demonstrate how important this life-saving drug was. It was a white man, obviously, saying, “I will lose my house and my family and I won’t be able to be a provider anymore if I don’t have access to this.” And it convinced the Senators to create what is often called socialized medicine for a single organ. It’s the only socialized medicine we have in this country, it’s for the kidney, it means that people who are in end-stage renal disease get access to dialysis technology. We only do it for that.

But it happened at the same moment that we were doing the same thing for vulnerable bodies that were not human. We did it at the same moment that we were thinking about whether we wanted to have seals anymore.

I found a lot of hope in that for pushing back against what I think is a lot of real inner darkness in American culture that does favor eugenics and fascism and always is looking for a way to get to the bottom line by dismissing the needs of workers, the ill, animals, dismissing the needs of just waterways generally.

I was coming into publication during the moment when we were trying to decide whether we were going to go back to this very dark administration or whether we were going to go forward. I kept going into spaces with a lot of hope and saying, “Well look, this is what we can do, this is what we can choose.” And then watching us choose something completely different to see how bad it can get, which is I feel like that’s the experiment we’re in for the moment, what happens when we make it impossible for people to afford their health insurance? What happens if we arrest everybody based on their skin color or the language they speak? What happens if we absolutely destroy every piece of scientific attention to climate change?

The part of me that feels still optimistic about it is while we did bring eugenics to the global stage and pioneer the absolute rapacious consumption of our natural resources in so many ways as a country, we also made the Endangered Species Act. It just takes a sense of political will and an organizing of the populace to say, “Not in our name.”

Nature as Family Legacy & Favorite Creatures

Lorraine: I do think it’s interesting that you were talking about all of these changes that were happening in the ’70s and the fact that your family has this history of a deadly genetic disease while at the same time, so much of your upbringing with both of your parents is being in close contact with nature and the environment and caring deeply about those things. How do you think those childhood experiences of illness on the one hand and natural world on the other hand shaped your trajectory?

Eiren: I feel like they really were hand-in-hand the entire time that I was being raised in a way that I didn’t really recognize. It was so integral to my childhood that I didn’t start understanding how deep that was until I started writing the book. I think part of that is, both my parents were born in New York City or its environs and they had very urban childhoods that were punctuated with these trips out into nature that were really healing and magical.

When I was born they decided to move to a very rural place. They moved from New York City to the Berkshires and were just in this idyll. Their joy in that was so contagious. That was so palpable that I think I just absorbed it. Then my mother working as an EPA scientist for her career and discovering geology, the way that she viewed and talked about nature was so much what I grew up in.

But I think also, the part of it that feels so connected to the illness is that when you have an illness that you are expecting will take you out of your family, you will die from it before you reach 50, which is the story of every generation up until just literally my father, he was the only one who survived into his 60s from his generation. And into me, now I’m in my mid-50s and I’m still not in dialysis, I haven’t had a transplant yet, I haven’t gone through end-stage renal disease yet.

But that sense of, I only have 40-50 years and only 30 of them are gonna be healthy, I’m gonna have to do a lot in that lifetime, and I’m gonna have things that I need to pass on to my kid. What feels like it has longevity? When you are someone who is drawn to the natural world, you can think of it as something that’s part of the legacy that you’re passing on. If I teach you about this river, if I teach you about this ocean, if I take you back to the places I love, when I am gone and you go back there, I will be there with you. We have that sense of nature being continuity. Even if my life is short, the life of this mountain range is long and my child will be able to come back to it and have a relationship to it.

I think that sense of, yes nature is a salve for illness and grief, but it’s also about legacy and the relay race of what a family with a genetic illness is like. You are definitely imagining what you’re handing off to the next generation in case you don’t make it to be with them in adulthood. You need to find some way to be with them.

My dad died when I was 29, I didn’t have my kid until 33, they are so alike, but in the same way that I never met my father’s father, I have to impart the memory of my father in these ways. I will take him to the stream where we had these significant experiences, and therefore he will absorb some of the longterm impacts of our family.

Lorraine: That’s really beautiful. Ok this is a pivot, and maybe an impossible question, but I’m curious if you had a particular favorite species that you explored.

Eiren: It’s so hard, there’s so many! I mean the favorite weirdo species that I mention all the time is the mola mola. The ocean sunfish.

Lorraine: They’re so weird.

Eiren: They’re so weird! And technically they’re plankton even though they’re 1500 pounds! And they’re just dorks, they’re dorks who are like, I’m gonna be in the sunshine and I’m gonna float along till I get some food. I just love them. When I get asked, ‘What’s the fish fun fact that charmed you the most during the research of the book?’ It’s usually they’re a plankton!

Lorraine: They’re so derpy looking.

Eiren: They’re derpy and their little fins, they can’t— they just can’t.

Lorraine: Every once in a while you come across something in nature and you’re like, Evolution what happened? You’re drunk, go home.

Eiren: Go home. Yeah I love that guy.

Here’s the thing, I want to tell you that I’m utterly fascinated with plankton because I am. And I have thought about getting them tattooed on my body because they’re so amazing and so key to the food web and they make life on this planet possible. I have this real ‘we shouldn’t just write about charismatic megafauna’ kind of attitude. Let’s talk about the little guys that never get any press!

But if I’m being honest I had such a wonderful experience talking with the right whale researcher that I interviewed for the book and I think about them so much because it’s so intrinsic to the problems that we’re trying to solve in terms of the relationship between workers and the environment.

I think of it as a really important story because we could simultaneously protect the right whale population and the fishermen of Maine if we only put money into upgrading equipment as a country instead of asking the fishermen to upgrade the equipment themselves. I think that link between the working class, who loves the whales, loves the ocean, also loves their relationship to the land, and needs a larger, more well-resourced entity like the federal government to come in and say, we value you, we value them, you’re not in competition, we don’t have to choose, here’s what we’re going to do to support both of you with tech and better ropes. People can’t feel like their livelihoods and their experiences and the validity of their relationship to place is invalidated because of conservation. We lose when we do that.

Also, the poetry of their existence! That the mothers whisper to the calves when they’re in dangerous places and their culture is matrilineal.

From Music to Writing to Finding Your Band

Lorraine: Ok, I’m getting into more process questions now. How do you think your background as a musician informs your writing?

Eiren: It looks like a detour but I think it was one of the most important training processes I went through as a writer. The thesis I was talking about that I did in college was very much part of the critical theory wave that came through colleges in the ‘90s and is still playing out and it was very intellectually based and research heavy. I was good at it and I loved it. I loved the research and I think as you can see in my books, that is still one of my happiest places, going deeply into the archive. But I knew myself well enough and I had been blown open enough by the trauma of my diagnosis to recognize that if I went down that path and I went and got a PhD, I would have a really hard time getting back to the emotions that had suddenly surfaced.

In music, I’m a lyricist so I believe song lyrics are poetic and beautiful even though they’re a different discipline than poetry. The gift of being a musician was that I would bring this embryonic piece of music that had a fragile and wiggly emotional core, I would bring that into the space of rehearsal with a bunch of other people and they would take it and they would blow it out until the emotions were actually present in the song. It would teach me what I was trying to get it. I did that for ten years and I learned how to think about the emotional core of what I’m trying to get at. And that there are things that make an audience—and therefore a set of readers—respond and feel connected. What is true of making a good album that tells a story, is the same thing that you need within your work as a writer to keep your audience feeling connected. Because that makes it feel universal, people feel carried along. Getting to do that in songwriting was something I needed to do for 10 years in order to understand how to do it in narrative.

Lorraine: I think there’s something to that idea of recognizing in yourself that if you turn away from any of that emotional work it’s gonna be gone forever. I relate to that very strongly. And also, that you’re doing this in community. I think that’s a misconception a lot of people have about writing. It is true we are writing solo when we sit down to our computer or pen and paper or however we do it. But we’re also constantly in conversation with other things that we’ve read, and then in the editing process, the revising, you are literally having conversations with other people about it. Writing is a community activity as much as song-making, it’s just not as visible in the final product to the audience.

Eiren: I am so evangelical about this, especially with young writers, but I feel like it’s something that the public needs to understand. That myth of the individual writer, it’s the same myth as the individual naturalist who goes out and climbs the mountain, and it leaves out all these people who really don’t thrive that way. It is absolutely communal work and I think it means it takes young writers a long time to feel like they’re allowed to build up the community that makes them better because there’s this sense that my ego, my sole individual production, and then when you come up against a moment of editorial support, it feels combative or like something I have to push back against.

Telling the story of my own work, I think it’s important to say, my raw version of a song was beautiful, I’m not criticizing that. Everything I wanted to do was there in it. And that’s true of my first or even second drafts in writing. What I want to do is there, my sensibility, my sense as an artist, my taste. But I trusted the band to see how to bring their own sensibility to make it even better, and bring their voices to make it even better. And I chose them on purpose because I wanted to spend time with them and I valued them as artists.

I’m the same way now about my editorial relationships. I was edited for an essay that came out in Guernica by Eryn Loeb and she changed how I thought about the structure of the work in that essay, that then changed me as a writer when I went to go write my book. My agent, Julia Lorde, I mention her all the time because I may have a second draft that I adore but the best part is when I get back her notes and I get to see how I can make it better, because we share a sensibility. Working across sensibilities wouldn’t work, if I was working with somebody that wasn’t aligned with me, so it’s not like every piece of information, every piece of advice is going to be resonant with you. But I say this all the time, you gotta find who you want in your band.

Lorraine: What is your favorite place to write?

Eiren: I have two. I really love writing in my house, my house is wonderful. We have a very extensive library throughout the house, I think it’s more books than anything else. And I have good days and bad days as a kidney patient. I have days where I can sit at a desk and be surrounded by my work, but I have many many days, especially in the last three or four years as I’ve been doing more teaching and touring and public life, I have many days where I’m writing from bed. I have an electric blanket, I have a little electric fireplace, I have a couple of windows that look out on my neighborhood and I can see the sky and the sun. And I have my cats and they do reiki on me, I’m convinced, while I’m healing up.

I used to feel embarrassed that I wrote from bed. There was a period where I was like, I should be at a desk, I should go out to the library—no. I love my bed, I love writing in it. It’s such a place of healing and rest and I think I’ve tried to normalize for myself periods of intense productivity in that space and periods where I’m in that space and I shut the laptop and sleep. That rest and restorative relationship to being permitted my artistic expression in a space where it’s safe for me is really great.

And the other place that I love writing is, if I’m healthy enough and we have the time and money to do it, going back to Monhegan and being able to write anywhere on that island, whatever cottage we’ve managed to scrape the money together to be in. Last summer we were in a cottage that was cheap because it didn’t have electricity but the fireplace had been built by Rockwell Kent, because he lived on Monhegan for a while. So being able to sit at this table and look at the fireplace that Rockwell Kent made and smell the ocean coming in from the porch, it was so dreamy I can’t even deal with it.

But honestly, bed.

Lorraine: And related to that last question, what does it feel like to write?

Eiren: As an only child, Taurus on the spectrum, I have a complicated relationship with play. So any place that I feel fully free to play is really stunning for me. Every time I get to sit down and write, it feels like play. I’m in the second draft of a novel right now and so I’m in imaginary world with people that I made up that I love that I get to hang out with, so I’m playing by engaging in that imaginary space, but I’m also playing because editing, moving bits around, seeing where the mistakes are, seeing where the cracks are is like playing in clay. I’m making something while I’m there.

I used to come to the page with a lot of anxiety about ‘was I gonna do it right? Could I succeed? Was I ever gonna get published?’ And that anxiety of my 20s and 30s has thankfully been worked through because I’ve put enough time in the writing chair, so to speak, to alleviate those places where my ego made me sad. Now when I go to it, I trust myself enough as a writer to know that whatever mess I’m encountering in the first draft or revisions, I trust my taste, my sensibility, my skill and my community enough to know that I’ll fix it, it’s gonna be fine.

Eiren Caffall is an author and musician based in Chicago. Her writing on loss and nature, oceans and extinction has appeared in Orion, The Writer’s Digest, Guernica, The Los Angeles Review of Books, Literary Hub, Al Jazeera, The Rumpus, and the anthology Elementals: Volume IV: Fire (The Center for Humans and Nature, 2024). She has received a 2023 Whiting Award in Creative Nonfiction, a Social Justice News Nexus fellowship, and residencies at the Banff Centre, Millay Colony, MacDowell Colony, Hedgebrook, and Ragdale. She is the author of the memoir The Mourner’s Bestiary (Row House Publishing, 2024) and the novel All the Water in the World (St. Martin’s Press, 2025).

Order Eiren’s book The Mourner’s Bestiary at your favorite local bookstore or Bookshop.org

Before Surgery

1) Find a doctor you like and trust. This can be a months- or years-long process, unfortunately. The first doctor I considered wanted me to have additional testing to check for pelvic congestion syndrome and adenomyosis and so on. I didn’t feel that my symptoms fit either of those diagnoses, but he required the tests of all new patients. He also focused on fertility treatments, which was not one of my goals with treatment.

The next doctor was wonderful, so kind and willing to answer all my questions. The tests she ordered were much less onerous: a vaginal ultrasound and an MRI. The MRI showed evidence of deep infiltrating endometriosis (when the lesions extend several millimeters into surrounding organs and tissues), which did point to the presence of endometriosis, but she said I might need a second surgery with a GI expert in case of a bowel resection. I asked if she could work with a GI surgeon at the same time as my endometriosis surgery, but she said the one they’d had on staff recently left. Even though I really liked this doctor, I didn’t want to have two separate surgeries if there was a way to have a single one. So on I went to the third doctor, who was also very kind, talked to me like a human, and said he worked with a colon surgeon in the O.R. So I wouldn’t need two surgeries.

I’ll add that all three of the surgeons I consulted specialize in treating endometriosis. If you’re going to have surgery, I think working with someone who specializes in the disease is the baseline of what you need, but I also recognize there are not enough endo surgeons out there, and for some people it would require traveling out of state to get the right care.

2) What to Expect in the Run-Up: Depending on whether you have other health conditions and which hospital system you’re in, your doctor might ask you to do some lab work beforehand. I’ve had basic blood tests (CBC/CMP) ordered, as well as a test for my blood type (in the rare event that I’d need a transfusion), an EKG (I have a history of hearth arrhythmias), and a nasal swab to test for MRSA bacteria.

A week or two before the procedure, you’ll get a call from the doctor’s office, and a nurse will go over any prescriptions or supplements that you're on, and advise which you need to stop before the surgery. The thing I’ve been told most commonly is no NSAIDs (painkillers like ibuprofen, advil, meloxicam, etc). That’s because they can cause bleeding problems during surgery. I've also been told to stop supplements like Vitamin D and fish oil, or just given the blanket order to stop all supplements to be on the safe side.

If you’re using NSAIDs to manage your pain, definitely bring it up with the doctor if you think you’ll need something else. Mine offered muscle relaxants as an alternative.

Another thing to work out in the weeks before the surgery is how much time you’ll take off from work. Surgery takes a lot out of your body, even if you go home the same day. For a laparoscopy, in which you’ll have multiple incisions in your abdomen, I find taking a week off to be really helpful for getting a jumpstart on recovery. That said, I know many people don’t have that luxury. But if you can get three days off, not including day of surgery, you should at least be able to stay awake through the day. You aren’t allowed to lift anything over 10 pounds for the first two weeks, though, so if your job involves heavy lifting, plan accordingly.

3) 24 Hours Before: If you haven’t already been called about when to show up at the hospital, this is the day you'll find out (O.R.s tend to schedule day by day in case of cancellations or emergency surgeries). You’ll also be told to fast starting after midnight, with no food or water. If you’re taking an approved medication the morning of the procedure (for me it’s my thyroid meds), you’re told to take it with a little sip of water. And, not gonna lie, I usually drink a bit more than a sip. Not a big glass, but the thing that bothers me more than hunger is being so thirsty. If you’re the first surgery of the day, however, this doesn’t matter as much.

It can be nerve-wracking the night before a procedure like this, but I tell myself that it doesn’t matter as much whether I sleep well or not, because I’ll be tired no matter what after the surgery. I try not to place additional pressure on myself to be super well-rested the night before. Instead, I focus my energy on organizing for the next day. I set out my outfit (usually an oversized pair of pajama pants and a t-shirt—anything with a loose waist) and make my activity bag. There can be a fair amount of waiting in the pre-op room, so I like to have a book, my phone or iPad, and whatever knitting or crochet project I'm working on to keep my hands busy. If you’re driving home after the surgery (which is usually the case, as this is almost always out-patient surgery, where you leave the same day), bring a pillow for the car. Not to sleep on, but to put under your seatbelt so the belt isn’t putting pressure directly on your incisions. Though you could bring a second pillow if you want to sleep. That sounds cozy, too.

I make sure to take off any jewelry (especially earrings, which are easy to forget) since you can't have it on for the surgery. Just leave it all at home the next day.

Day of Surgery

1) Check-in and Pre-Op: You can’t drive after being under general anesthesia, and I’ve never been to a hospital or surgery center that will allow you to just Uber home afterwards. You need a designated person to get you home and be with you for the next 24 hours. If that person comes to the hospital with you, they’ll be given info about the waiting area and a patient number so they can follow the timing of things.

From there, it’s off to the pre-op room, which might be a single room, or might be a large space with multiple beds and curtains closing them off. Here’s where things get started. You change into the hospital gown and slippers, and a nurse comes to insert an IV and get your fluids going. You’ll talk to a handful of different people about the procedure: the anesthesiologist, O.R. nurses, and the surgeon. Each one will make sure you understand what will be happening during the procedure, and go over your medical history.

Here is a very important point: if you’re prone to nausea at all, even a little bit, like sometimes you feel a hint of carsickness, TELL THEM. Especially tell the anesthesiologist. Having surgery on your reproductive organs can be a huge trigger for nausea and vomiting (as I learned the first time around, when I vomited for about 10 hours straight and had to be admitted to the hospital overnight). Because I knew this was a risk going into my second surgery, I emphasized it to everybody. The surgeon gave me some medicine in advance and said she’d be sure to keep me dosed up on anti-nausea meds during the procedure. And guess what? No puking this time! Sweet relief.

This whole process of talking to doctors and getting set up could take anywhere from 45 minutes to a couple hours, depending on where you are on the schedule. And that’s why you have your activity bag with you. Most hospitals will also allow you to have your driver/support person in the pre-op staging area with you, so that’s also a good way to keep your nerves under control.

2) Final Minutes Before Surgery: This is the fastest part of the day. You’ll get to wear a lovely hairnet, and then you’ll be wheeled to the O.R. On the way, the nurses will give you some kind of sedative/anti-anxiety medication that gives you the warm fuzzies and maybe starts to make the room spin. If you’re still awake when you get there, the nurses will have you maneuver out of the bed onto the operating table. Then it’s lights-out.

Another important note: a lot of anesthesiologists use a medication called propofol to knock you out. If you’re still awake when it goes in, it can feel like a burning sensation in your arm. This is unfortunately pretty normal, and doesn’t mean anything is going wrong.

3) Post-Op: Coming out of anesthesia is not pleasant. I generally have significant shaking, like I’m the coldest I’ve ever been. Some of this is because the O.R. is kept very cold, and you’re half-naked during the procedure. Some of it can be your body’s reaction to the drugs they use. It’s uncomfortable, but it never lasts too long for me. You’ll be piled up with blankets, and maybe even a machine that blows hot air onto you.

The nice thing is that there’s always a nurse monitoring you, asking about your pain and reminding you to take deep breaths (anesthesia suppresses breathing). If your pain is really intolerable, be sure to say so. The nurse will give you more medications through your IV, and they tend to hit pretty fast.

You’ll be monitored in this first recovery room for 30-60 minutes, while you’re still woozy and mostly out of it. The nurse will give you some ice to chew, but nothing else. They have to be careful about introducing liquids right away because of the risk of nausea. In my first surgery, I got sick just from the ice.

Once you’re deemed stable enough, you’re wheeled to the final recovery room. That’s where your support person will meet back up with you. Here’s where you get your first real liquids and a snack. Nurses will continue to check in with you, but you won’t be monitored at all times. The surgeon might also come in if he has time, but not always.

One of the things I love best about my surgeon is that he makes a video on the patient’s phone reviewing photos from the procedure and explaining everything that was done. This is SO AWESOME. From what I’ve heard, it’s also far from common practice, but maybe it’s something you can ask the surgeon, if you have a good relationship with them.

Before you’re allowed to leave, you have to eat and drink something and keep them both down, and use the bathroom. During the surgeries I’ve had, the nurses place a pad and some flimsy fake underwear on you while you’re still asleep, since I’ve also had IUD insertions done at the same time as the rest of the operation, and this causes bleeding. You can ask the hospital to give you another pad for your underwear for the way home if you don’t have one.

Once you’ve demonstrated that you can walk around, eat, and pee, the hospital will discharge you. They wheel you down to the front door in a wheelchair, where your support person is waiting with the car.

Share

First 24 Hours Post-Surgery

1) Driving Home and First Meal: Not gonna lie, this part sucks. Especially if you happen to be driving home through rush-hour traffic in Chicago or any other major city. I highly recommend getting some vomit bags from the hospital before you leave, just so you have them on hand. The only time I felt serious nausea after my second surgery was on the drive home, when I came real close to throwing up in one of those bags. Thankfully it was limited to heaving a few times.

If your surgery is more than a 30-minute drive away, finding a nearby hotel to stay in might not be a terrible idea, if you can fit it in your budget.

Once you’re back at home, you might feel like you should eat something, but follow what your body wants. Definitely stick to bland foods for the first day or two. Your organs just got messed with! Protein is super important, but you can get that through protein shakes if nothing else sounds good. I’m also a fan of scrambled eggs and rice.

2) Bedtime: Anesthesia can make it hard to sleep the first night you’re back, on top of the pain and discomfort. Laparoscopic surgery requires inflating your abdomen with a bit of air, and there’s no good way for the surgeon to get all of it back out again. This feels like the worst gas you’ve ever had, and the pain gets referred to your shoulder. It sucks. But if you’re burping or passing gas, that means you’re getting it out.

Another thing to stay on top of is the pain medications. Every surgeon probably has a slightly different protocol, but mine recommends alternating 1000mg of Tylenol with 600mg of ibuprofen about every four hours. For the breakthrough pain he prescribes Norco, an opioid-tylenol mix. I try to only take that a couple times because it makes me feel very woozy and causes constipation. The other thing the doctor prescribes is a stool softener to take twice a day, and that can be really helpful for the first week.

If there’s still additional abdominal pain, try a heating pad. My hot water bottle was my best friend the whole week after surgery.

3) First Day After: If you don’t sleep well the first night, don’t beat yourself up. Take a nap. I highly recommend daily naps for the first three days post-op, because your body is doing A LOT of work to heal. Move around if you can, because it helps get the gas out of your body, but don’t try to rush into anything strenuous. I aim to just make it a little farther on a walk every day, even if I’m starting out with going just halfway down the block. Be mindful of your pain. If you let it get really bad, it’s harder to bring it down than if you stay on top of it.

You can usually shower the first day after, and remove the bandaids over your incisions. Mine have always been covered with steri-strips to hold the wounds together, along with the internal stitches. It’s normal to have bruising around the incisions, though you’ll definitely want to call your doctor if you have a lot of bleeding or any signs of infection.

It’s normal to have a slightly elevated temperature the day after surgery, but if your temperature goes over 100.4°F, call the doctor. It’s also normal to have vaginal bleeding for a week afterwards, but again, if this is super excessive, call the doctor. (They’ll tell you all this, too. But I think it’s good to be aware in advance.)

The final note that I find pretty funny is that you’re not allowed to sign any contracts or enter into legal agreements for 24 hours after being under anesthesia. I’m not exactly sure why, but I’d guess it has something to do with the fact that you are not of sound mind till those drugs are out of your system.

First Two Weeks Post-Surgery

1) Surviving Pain and Discomfort: Take it easy the first week, and try to be patient with yourself (I find this part incredibly challenging). There’s no sugarcoating it: for me, this week really sucks. I’m exhausted, my body hurts, and I generally feel a malaise. It might be painful to go to the bathroom, especially if your bladder or colon had anything removed. Lucky me, I got things removed from both those areas on my second surgery! Emptying my bladder hurt a lot for the first few days, like a deep pelvic pain. I had near-constant pain on the right side of my pelvis where some endo was removed. It wasn’t excruciating for the most part (thanks, pain meds!) but it was uncomfortable, and it drags at you.

I recommend lots of bad TV or silly movies, short walks outside to smell the fresh air, and any crafts that you find soothing and engaging. I also read when I had the energy for it. And I reminded myself of a saying a friend likes: Take things one moment at a time, and you get to define the length of the moment.

By the second week, I feel like I’m emerging from a pit in the earth. I can make it through the day without napping, I don’t have to be quite so vigilant about taking pain relievers every four hours, and I have my appetite back again. The gas pains are also gone at this point.

2) Follow-Up Appointments: My doctor schedules a virtual follow up sometime within the first two weeks. Before the visit, I’m instructed to remove the steri-strips from the incision sites and take pictures so the doctor can review them beforehand. Hopefully they’ll start looking like the wound is healing.

At the appointment, the doctor or nurse will review the surgery and any pathology findings (they send off everything they remove to a lab to have it identified). You can ask all your questions, raise any concerns, and possibly schedule your next follow up. You’re solidly on the road to recovery, and by the end of the second week will hopefully feel like a complete human again.

I hope this guide is helpful to anyone who might be contemplating surgery for endo in the near or distant future. If you ever have questions about my experience, feel free to reach out! Both surgeries have significantly reduced my pain and other symptoms, and even though the recovery sucks, I in no way regret doing them.

That was my ninth surgery, seven of which have happened in the last decade. I don’t share this because I’m looking for sympathy or well wishes or to lament how hard my life has been. (Of course there are bad days, but mostly my life is pretty good.) I’m sharing it more to emphasize that surgery is another normal part of managing a half-dozen chronic illnesses, alongside daily and monthly medications, steroid injections for pain relief, physical therapy, regular blood tests and scans, and doctors appointments.

Does it sound like I’m describing a second job or side hustle? That’s what it feels like sometimes. But mostly, it’s just part of the rhythms of my life.

And this is what I think people without chronic illnesses or disabilities have the most trouble understanding: that being sick with something incurable means it doesn’t go away. You don’t “get better” in the traditional sense of recovering from a cold or flu.

Share

Sometimes diseases go into remission, usually with the right medication. Sometimes a treatment works really well and holds things at bay for months or years. That’s why I made the choice to have a second surgery for my endometriosis: the first one significantly improved my pain and other symptoms, so when those symptoms came back, I felt reasonably confident that having another procedure would be equally effective.

I don’t like having surgery; the weeks of recovery are not pleasant. But I’m also grateful it’s available as an option, because in the past people just lived with pain or died. I also don’t love needing immunosuppressant drugs to keep my immune system from destroying my bones and ligaments, but I’ll take them over injecting gold into my joints (an actual treatment for rheumatoid arthritis throughout the 1900s). We may not have cures for many autoimmune diseases yet, but we do have effective treatments. They just require… a certain amount of time and energy (and health insurance and money, at least in the U.S.) in order to maintain your baseline.

I’ve come to think of my constellation of chronic illnesses as an experience of ongoingness. For me, this word is representative of anything that is happening or continuing, with no determined end in sight.

For my illnesses, there are frequent fluctuations. They ebb and flow, flare up and calm down, require a lot of my attention or very little of it. They’re always changing, overlapping with and diverging from the ways in which I’m always changing—physically, mentally, emotionally.

Most of the cells in our bodies replace themselves on a very regular basis. The cells of the stomach: 2-9 days. White blood cells: 2-5 days. Alveoli of the lungs: 8 days. Red blood cells take 4 months, and for bone, there’s a 10% turnover every year. We’re all ships of Theseus, walking around convinced there’s some static version of who we are, when the biological reality is constant reinvention. You could say that life is a form of ongoingness, too.

Then there are the two main forms of ongoingness that exist outside me (at least the two I find most notable): climate change and war.

I’m reminded of these on an almost daily basis, in one way or another. The weather in Chicago this week is unseasonable (although that word has less and less meaning as the seasons change). 72°F on Monday, which is about 30° above the average for this time of year. We have thunderstorms in December now, instead of snow. Every summer seems to bring record-breaking heatwaves, every fall record-strength hurricanes. My sinuses notice the allergy season getting longer, an extremely unappreciated development.

Weather happens every day; it’s impossible not to be at least somewhat attentive to its swings. And for someone who has lived most her life around the Great Lakes, impossible not to notice how things have changed over my lifetime.

And then there’s war.

I was 12 when the U.S. invaded Afghanistan after 9/11. Two years later it was Iraq. American troops left the latter in 2011, but were still in Afghanistan till 2021. That’s twenty years of my life in which my country has been fighting somewhere else for nebulous or nonexistent reasons. And now, the U.S. and Israel are attacking Iran—ostensibly to prevent them from building nuclear weapons and to overthrow a despotic government.

We’ve been at war for far more of my life than not. It’s one of the worst forms of ongoingness I can think of. I don’t want my country’s military bombing anyone, terrorizing civilians and attacking schools. (For an excellent article on where things are at in terms of it being a “war,” check out this post by Marisa Kabas.)

The images out of Tehran are apocalyptic, thanks to a number of oil depots being destroyed. There are fires in the streets coming from gas lines, and acid rain making it nearly impossible to go outside without causing significant health effects. Tehran is a city of 10 million—civilians who have already been threatened and murdered by their own government for pushing for greater freedoms. I don’t pretend to understand the way everyone there is feeling about the attacks, whether they’re happy a despot is dead or terrified of what comes next. But the tactics of the U.S. and Israel could hardly be classified as “liberation”—bombing schools, destroying infrastructure, subjecting people to extreme forms of pollution.

Where is our responsibility when it comes to the many forms of ongoingness we’re all stuck in? To me, the answer is fairly straightforward (though its application is much more complicated). We work to reduce suffering wherever possible, to cause the least harm, to create the most flourishing. That is why I have surgeries, and take medicine with sometimes dangerous side effects, and see more doctors than I’d otherwise choose to: because this work of maintenance keeps me from getting worse. I had arthroscopic hip surgery at 34 so I wouldn’t need a hip replacement at 40. I take thyroid medicine to keep my body from over- or under-producing necessary hormones. I go to PT so I can keep painful joints active and strengthen my muscles without causing damage.

I recognize there is much that’s out of my control when it comes to my body. I didn’t choose to get sick. I can’t predict what will happen to it in a day or a week or a month or a year. This is ongoingness. But ongoingness doesn’t mean passivity or apathy. It certainly doesn’t mean accepting the worst-case scenario. I alone cannot change the course of CO2 and methane emissions that are warming the planet and causing weird weather and more frequent disasters. I’m often frustrated by how little I can do as an individual. But I can still do things, like support environmental organizations and limit my own consumption.

Subscribe now

I cannot prevent the president of my country from attacking another country. But I can stand against the war, because war does not need to be part of ongoingness. I can march, and call representatives, and I can share my thoughts with others, and encourage them to do the same.

I read a fairly depressing (though very fascinating) book recently called The Anatomy of Fascism, by Robert O. Paxton. Paxton is a historian, and he lays out the conditions that allowed fascism to thrive in Germany and Italy, but not in other areas—even though there were pockets of fascistic support in nearly every country in Europe in the 20th century. The point that Paxton stresses repeatedly is that Hitler’s rise to power, Mussolini’s rise to power — neither of these things were inevitable. If people had made different choices along the way, history may have gone very differently.

That is still true now. There are many depressing forms of ongoingness all around, but that doesn’t mean they are inevitable. We can choose to do things differently. We can choose a better world.

I don’t record the scores anymore (we don’t even get to see the points from individual judges for figure skating!), nor do I have any illusions about the possibility of ever competing as an Olympic athlete. (Ok, maybe once in a while I think, I could probably get good enough at curling to be competitive). But I still avidly follow the competitions over the course of two weeks, and let myself become a bit of an armchair expert on sports that I know almost nothing about.

I’ve heard from a lot of people that they prefer the Summer Olympics, and this always leaves my flabbers fully gasted. Sure, it’s fun to see people compete in swimming and track. I really enjoy the gymnastics and diving and synchronized swimming, the more artistic of the events. And two-on-two beach volleyball is an enjoyable nail biter. But what’s missing from the Summer Olympics is the absurdity factor.

Someone decided to hop head-first on a little sled and shoot down an ice tube for funsies, then named it “skeleton”? As if that’s supposed to make us take it more seriously? Or to ski down a ginormous hill and then leap into the air like a flying squirrel to see how far they could fly? Or stack two people on top of each other in skin-tight suits and once again sled down an ice tube?!

The Winter Olympics sports are ridiculous. They are so silly. And also, frankly, very dangerous!!! I never want to see anyone get gruesomely injured, but I will admit that the element of risk makes things more interesting. In my more delusional moments, I think, Sure, I could probably learn to do most of the events in the Summer Olympics, even if I don’t become a pro.

You could not pay me any amount to try ski jumping (the aforementioned event wherein participants pretend they are flying squirrels on skis).

During the 2026 Milano Cortina Winter Olympics, I saw downhill skier Lindsey Vonn compete with a ruptured ACL, then wipe out within seconds of starting her race, and start shrieking before the newscasters cut her mic. Turns out she shattered the bones in her leg, and said leg had to be “filleted” open (her words, not mine) in order to prevent it being amputated. During that same race, the commentators casually shared that of the top 10 women in downhill skiing, there had been 20 serious injuries.

I’m sorry, has everyone just decided this is fine?!? These people are more committed to dying for our entertainment than Tom Cruise!

Then there was short track speed skating, in which one skater after another crashed into the barricades surrounding the rink, sliding off their feet at speeds of around 30 mph. In one particularly brutal crash, a trio of women tumbled down and race officials had to call everyone off the ice because the Polish competitor had her eye slashed by the blade of another skater. They then spent a good fifteen minutes cleaning blood off the track. What in the Apolo Ohno?!! (Apparently she needed surgery but is doing ok.)

Snowboarders crashed on the half pipe. Skiers wiped out on the downhill—and the slalom, and the aerial, and the moguls. A few bobsleds crashed and flipped on their sides. Figure skaters missed their jumps and fell hard, hockey players got into fist fights. I think the only athletes who came away unscathed were the curlers, but who knows, maybe one of them dropped a stone on their foot at one point and broke a couple toes.

I know being a professional athlete means pushing yourself farther than you think you can go. Even without crashing out on big snowy hills, you run the risk of injuries. Hell, I tore my rotator cuff as a high school swimmer, an overuse injury that probably occurred because I’d been swimming competitively for almost a decade. And then I tore my meniscus at some point while competing in a triathlon. Human bodies are resilient but also very fragile, and if you build your life around doing physically strenuous (not to mention dangerous) activities, you’re likely to get hurt at some point. I imagine most pros are well aware of this, and take whatever precautions possible to avoid getting hurt badly enough that their sports career will end.

Subscribe now

But as much as I love the Olympics, the culture of winning at all costs strikes me as pretty toxic. I wish more athletes felt like there’s a life to be lived outside of their sport. Why was Lindsey Vonn skiing on a ruptured ACL?! That woman shouldn’t have even been walking on that leg!! But as she repeatedly told reporters, she always needs to push things to the limit, and apparently she has no regrets?!!?

No regrets?!?!

I have questions. Like, Has someone brainwashed you? And, Is downhill skiing a cult? Do they put mercury in Olympic gold medals to mentally debilitate athletes so they keep competing far beyond when they should stop? But mainly, What the f***?!

Given all this context, it makes perfect sense that my favorite event would end up being the figure skating gala, in which prize-winning athletes just do whatever routine they feel like and have fun with it. No judging, no points, no constraints on the music or style or moves required.

My friend Jackie tells me that these galas are a mainstay of the figure skating circuit, and they happen after all the major competitions. She is far more knowledgeable on the subject than me, because she actually follows sports for long periods of time and gets invested in the athletes as individuals. Whereas I prefer to keep my relationship with sports low-commitment, limited to a few weeks every couple years when I will be all-in, and can otherwise pretend the world of professional athletics doesn’t exist.

I digress.

I think what tickled me so much about the figure skating gala was that it leaned into the absurdity of the sport rather than taking itself so seriously. And it was glorious. The Spanish figure skating team dressed up as soccer players and literally kicked a ball around the rink, in their ice skates. Korean skater Lee Hae-in performed to a medley from “K-Pop Demon Hunters,” which included a costume change from the “Saja Boys” final look to that of the girl band HUNTR/X.

And Mikhail Shaidorov, the Kazakhstani skater who still wears braces and won gold in the men’s figure skating event, dressed in a panda costume and performed an impressive routine in it (including an inexplicable duel with one skater dressed as a Mortal Kombat fighter and another dressed as Dead Pool?! I don’t even know). When he skated off the ice, still in his panda suit, Jackie Chan was waiting for him with two little stuffed pandas.

Look, I know if an Olympic medal is on the line, I would almost certainly push myself too hard. Who knows, maybe I’d be just like Lindsey Vonn and return to the sport after I had previously retired, and ski with an injury. I can only imagine how thrilling and heady it is to be the best in the world at something. To have literal proof that you can do something faster or better than anyone else that is currently doing the same sport. That probably feels amazing! Of course I would take it super seriously! (Not to mention the financial incentives of being a recognizable ambassador of a sport and the U.S. Olympic team.)

Share

But I’m so glad that the figure skaters get to have some fun after the hard work of competing. I’m glad that many of them reached for joy and silliness, or even beautiful self-expression. I wish more athletes had an opportunity to do this kind of exhibition. Ski down a monstrous mountain wearing a tutu. Snowboard performances that won’t be judged, wearing your favorite costume or a fun decorated helmet. Luge athletes who take on the track sitting up. (Is that even possible? I don’t know, not an expert, obviously).

I think what often gets lost in professional athletics is that these are all forms of play. It’s the Olympic GAMES after all. I know there’s more at stake than a backyard game of kickball, but also, I love when the athletes just look like they’re having a wonderful time. Like Alyssa Liu and her delight in figure skating on her own terms. Or the snowboard cross guy, Nick Baumgartner, who at 44 was the oldest American athlete to compete. He was knocked out in the semifinals by someone who went just 0.08 seconds faster than him, which sounds gutting, but instead his response was, “I’ve never had so much fun losing in my life. It’s a great time.”

Maybe the point I’m trying to make is that life has plenty of hardships and sometimes, (especially when living through a rising wave of fascism) we should get out of our own ways and look for goofiness and joy.

But I’m still never doing ski jump. Even if this poster from 1960 makes it look rad.

I first came across Jeanna Kadlec’s writing when someone reposted her article about creating “book altars.” I loved the idea of having a physical space where you nurture the relationship with ongoing projects, and promptly went to buy myself a few small houseplants that could act as avatars for the different projects I’m working on. And next, I picked up Jeanna’s book, Heretic: A Queer Revolt Against Evangelicalism, Empire, and the Lies We Are Sold.

A memoir that’s beautifully written and deeply researched, it tells the story of her Midwestern upbringing in the Evangelical church, her marriage to a man, and her eventually coming out and move away from the church. I didn’t grow up Evangelical, but it still spoke to me in so many ways. I was delighted when Jeanna agreed to do a Q&A about her book. We got into patriarchy and purity culture, finding queerness and community, and the way Evangelicalism is deeply entwined with American politics. I hope you enjoy our conversation about all the ways that religion, spirituality, and writing are embodied experiences.

The interview was edited for clarity and length.

Patriarchy, Purity Culture, and the Myth of Hard Work

Lorraine: Pretty early in the book you write about your dad converting to Evangelicalism and how that changes your relationship with the church. Can you talk about the role of gender and patriarchy in Evangelical Christianity?

Jeanna: The role of gender and patriarchy is not one that the churches I grew up in would ever explicitly acknowledge, and yet at the same time they’re all deeply founded in this idea that they call “male headship.” A man is the head of his family, the husband is the head of the wife, as Christ is head of the church. That’s quoting from the Apostle Paul. There is the literal analogy around marital submission. There’s also this idea from patriarchy, as this macro to micro analogy that is made between men being the head of a country, the head of a church, the head of an organization in public life, vis-a-vis how they are also the head of their own family in private life. It’s the entire worldview that is baked in within Evangelicalism. And it’s certainly not unique to Evangelicalism, you see this in a lot of high control patriarchal religions, the Abrahamic religions particularly.

Gender and patriarchy in the church is merely the model for how they believe the world should be working in private and public life. So when you have Evangelically-informed politicians, whether it’s the devout guys like Mike Pence—former vice president, former governor of Indiana—or the politicians who are ostensibly just using religion as a cover for their own shitty beliefs, that’s how we get laws that are so significantly cracking down on women and queer people’s reproductive rights, and these ridiculous bathroom bills. It extends into every facet of life because there is this central belief in the God-ordained power and primacy of Man over everyone and everything else.

Lorraine: You also talk a lot about purity culture in childhood and adolescence and the way it polices girls’ bodies. Other adult women are even complicit in it. How did that affect your relationship with your body and how have you tried to heal from it?

Jeanna: Growing up in 90s Evangelicalism, purity culture was just the water I was swimming in. There was no relationship to the body outside of that. And purity culture’s framework is that men are primary, women are inherently tempting, there are only two genders, it’s all a binary. As harsh as it feels to reproduce that in my own language, that’s how they see it, and that’s how I was raised. The foundational idea that’s out of John Calvin’s theology—he’s one of the Protestant fathers who’s a little bit less known outside of Christianity than Martin Luther—Calvin’s idea of total depravity was the foundation of purity culture for me. Not that it was ever called “John Calvin’s idea of total depravity,” there was just the interpretation of Scripture that human beings are inherently evil, that we are all born sinful, that we can only become good through the grace of God. Bodies are bad, flesh is bad, temptation is bad. To me purity culture is also rape culture, because there’s no version of purity culture in which men have agency over their reaction to you. It’s entirely damning to survivors and it’s entirely forgiving of rape and of assault.

So there’s the foundational piece that you’re automatically bad, and then there’s the patriarchal stuff that gets layered on top around policing clothing. School dress codes are a big part of this, wearing appropriate clothing in church is a big part of this. Like you said, women being a part of policing younger girls. I got taken aside by older women all the time and told my clothing was inappropriate. I have very strong recollections of this happening in the winter, in northern Wisconsin, when I was literally in jeans and a big oversized chunky turtleneck. That was one of the experiences I had in high school that really drilled into me, this actually isn’t about clothing being revealing, this is about policing the body. I very much internalized the lesson through those kinds of experiences that there was nothing I could do to be a better girl or a better Christian because my body was what was wrong. I developed very early, I hit puberty very early, I have always been very curvy, and there is nothing I can do about that. But it was very much reflected back to me routinely that the body is inherently sinful.

People who are raised as women, femme folks, whether or not you grew up in the church, you have a lifetime of deconstructing everything generally. Because these dress codes and whatnot, that extended beyond Evangelicalism, beyond parochial schools, they were also in public schools. Spaghetti straps were not allowed at my public high school for a while in the early 2000s. So I think there are also so many ways in which purity culture acts upon and enforces itself on folks who did not grow up religious or going to church.

It’s a lifelong process of trying to heal from it. Every time I’m like, Ok cool, I’m good now, something else pops up. I think that when you are raised in it, baked in it so thoroughly, it’s a lifelong process. Rather like meditation, of noticing the thoughts that flicker and say, Ok, release that, I don’t need to be attached to that. How I look is not inherently moral, it does not connect to whether or not I’m a good person, it does not connect to how much I deserve kindness or how much I deserve respect. I’ve been out of the church for almost 15 years now. For as much as I’ve noticed and worked through, I am under no illusions that it’s done.

Lorraine: I really appreciated the way that you explored how meritocracy through hard work is a mythology of the American experience, and that there’s overlap in the secular and religious world around hard work. Can you talk about that overlap?

Jeanna: At least in the United States, we cannot overlook the fact that it was founded not for religious freedom, but as a religious enclave essentially. For the Puritans, to be a good Christian and a good citizen was the same thing. And all education was toward that purpose. They had a very Calvinist, a very Protestant idea around hard work and ascetic living. Very much anti-Prosperity Gospel as we would articulate now. I go to church and I help my neighbor and I work hard for my neighbor because we’re part of this religious settlement. And it is both evidence of faith but also evidence of my good participation in building up this colony that I am doing both of these things. In as much as I think Christianity is a kind of civic religion that has emerged out of Christian culture, it has its roots in that Puritanical ideal. There’s a circle between showing up for Bible study and showing up to build someone’s barn.

And not that we’ve ever moved out of Puritanical culture, but as the U.S. became more explicitly secular, and certainly by the time the U.S. is becoming its own country and declining to enforce any official state religion—mostly for fucking tax purposes—there’s still very much this conflation of it being good and moral to work hard. The subtext in that, which wasn’t subtext in the late-18th century, was that it was also evidence of being a good Christian. The further away we’ve gotten from those initial founding years, the more the subtext that it is good to work hard because it is Christian has gone underground, and now the “hard work equals you’re a good person” has been absorbed into the mythos of the American dream. You can just move here, work hard and be successful.

With how explicit racism is in the U.S., there’s been so much work done to really subordinate any articulation or understanding of how class works. That has been done in the service of racism. That’s how the ruling elites controlled poor white folks. We’re gonna give you proximity to whiteness and in return you’re not gonna notice how much more you have in common with the Black folks who are working, and with indentured folks. I bring that up because I think the suppression of the discourse about class, the suppression of how economics works, has really gone hand in hand with the meritocracy kind of Christianity that has emerged in this country. You’re a good person, you show up, you work hard, good things happen, that’s it! Which is also what evolved into the Prosperity Gospel.

Share

Lorraine: As you were talking it was making me think about how they’re planning on restructuring Medicaid and SNAP with work requirements. And it’s like, ok, you are sick or disabled enough that work is impossible, so you need these benefits. You need this support, but now also you have to work to prove that you’re doing enough to get this? It’s just ... ugh.

Jeanna: I’m so glad you brought that up. I think outside of the country’s history of Protestantism as the civic religion, without that context, it’s very hard to wrap your mind around the logic of why you would enforce work for Medicaid or SNAP. It makes zero sense taken on the surface, until you introduce the religious component. And not that it is justified or logical, but that thinking and that worldview is so essential to understanding so much of Republican politics.

I’m not saying as a whole Republicans are devout. I think one of the biggest missteps the Democratic party has made in the last 30, 40 years is basically ceding religion to Republicans. The Democrats have done so much wrong, but they basically ceded all moral high ground that can be claimed with religion to the Republican Party, and this is the inevitable outgrowth of the Republican’s version of God and Christianity.

Lorraine: And yet it is priests and ministers and pastors getting arrested for protesting.

Jeanna: What we’re seeing in Minnesota is such evidence of the interfaith leaders who are doing work. There are so many denominations, there are so many churches throughout the country, who say that’s not their version of God, Christianity, faith, whatever. And we see that evidenced in like you’re saying, all these faith leaders being arrested on the ground, and the new American Pope standing 10 toes down for immigrants and that priests should be on the front lines to protect their flock, as it were.

[Side note: I shared a little with Jeanna about how this schism in the Catholic Church is exquisitely depicted in Rian Johnson’s murder mystery “Wake Up, Dead Man.” For a really excellent break-down of the movie, check out this article by Leah Schnelbach.]

Queerness and Community

Lorraine: In the book, you write about how you were really depressed, you were suicidal, you were in a terrible relationship with the church and your husband. How did discovering and exploring your queerness save your life in that period when a lot of things were falling apart?

Jeanna: I really do think of coming out as a death and resurrection. There’s a before and there’s an after. Once you know and you’re on the other side of it, it puts a different light on everything that came before. I’m gay. Men were never it for me. It just puts so many things in stark relief. I really looked at the ways in which I’d had this drive toward feminism, I’d tried to cultivate a kind of feminism even within my faith, just this idea that men and women were equal, that was feminism to me. But as tentative as my efforts sometimes were, it provided a real foundation that once I finally was out to myself, I was like, Oh that’s what this is. This is also a profound desire to be centering women in all parts of my life. It felt like everything clicked into place.

And initially coming out to myself and realizing I was in love with my best friend in graduate school was very—it was the kind of breaking that is impossible to square. There was so much cognitive dissonance that I had tried to square in my own experience. When I grew up there was a lot of violence in my home, my dad was very abusive toward my mom in particular, that had been hard enough to try to square in a God-ordained marriage and the world, but realizing I was gay, I was like, This is everything, this is how I am. I just could not square it with being married. How could God let me marry a man? Those two things, there is no reconciling them whatsoever.

It’s interesting to frame it as how queerness saved my life because there were a lot of months there where it really sent me into a spiral that worsened things before I started to emerge on the other side. I think what saved my life was coming out, but also being in an environment that had a more queer worldview. I was in graduate school, I was in Boston, I had friends who had not grown up with this, and it made no sense to them that I was trying to stay married. And they were asking me questions and saying, ‘No you’re still a good person if you get divorced, what the fuck are you talking about?’ They really helped to weave this net that held me together before I could do it for myself. That’s a really messy answer.

Lorraine: No, it’s kind of a messy question and I probably phrased it too simplistically. But I do think it is about the community that you’re around. For me, I’m bisexual, and it was so confusing. I didn’t even know until literally my 20s that bisexuality was a thing. There were a couple gay kids in my school and I was like, ok clearly I’m not that, I like boys. And then when I realized, it’s like you said, everything appears in a new light.

Jeanna: That’s my wife’s story, too. We both grew up evangelical—she’s talked about this publicly which is why I’m bringing it up—we’re both estranged from our families, and we’re both divorced from men. When people hear that, especially if they’ve read Heretic or know my story, they tend to conflate them and be like, ‘Oh, both of you had this kind of experience of getting married really young to a man and you’re gay.’ And that was not my wife’s experience. Yes, they got married very young but they were very in love. They were together for 13 years. When they divorced it was deeply amicable, deeply respectful, they have a lot of love for each other. I was friends with him. It’s in no way the same thing. I think it’s very tempting sometimes for folks we meet—because my story more fits with the evangelical ‘oh it was bad and now it’s good and isn’t it great that you’re married to your wife?’ But her story—and I think to what you’re saying, with the liminality of bisexuality generally— it’s not as neat. It requires more comfort with the porque no los dos?, two things can be true at the same time.

Tarot, Astrology, and Reconnecting to Spirit

Lorraine: Later in the book you write about getting into tarot and astrology, and there’s a story also the story you share about seeing Jesus appear and dismissing him. I’m curious how your new path in spirituality has enriched your life, even as it’s not a replacement for what came before.

Jeanna: Discovering tarot was such an important part of my journey. The thing is to me, tarot and astrology are very much tools. They’re not the thing in and of itself. They can be spiritual practices, but they’re not inherently spiritual practices. Plenty of people use them for other reasons. And plenty of Christians use both, particularly astrology, because astrology has thousands of years of history and documentation and many different traditions.

I do think what tarot was so essential for was that it helped me practice being the authority on my own life in a way that the church actively instructs you that you are not. You cannot make these decisions for yourself without checking with your father or husband or God or whoever. You are not good in and of yourself. Tarot really encouraged me to think about ways in which I could make decisions. This sounds so elementary but truly, my daily dialogue with Jesus was a never-ending stream. I guess you could call it prayer or meditation or just talking, but the way in which cutting that relationship off felt like, ‘But how do I make decisions now? How do I figure out what I want? I don’t even know what I want because I only want what God wants.’ So the tarot was just such a tremendous tool to teach me what the fuck I wanted. And to practice in a very safe way, in the confines of my bedroom, at my little desk, practicing articulating who I wanted, what I wanted. It helped me figure out that I wanted to leave my PhD program, it helped me figure out how to ask girls out. It’s so impossible for me to think about what my coming into self would have looked like without that tool. It was so invaluable.

At the same time, even as I was using tarot and getting into astrology, I was so resistant to spirit. I was so resistant to any idea of God, which to me meant an authority over my life. I did not want that. It’s always funny to me when people are like, ‘Oh you replaced religion with tarot,’ and I’m like, ‘That’s not how that works.’ Tarot was teaching me how to answer to myself, it wasn’t introducing any spirit that I would pray to or deities or what have you. And yet, at the same time, I had grown up having a lot of encounters and experiences that are quite impossible to dismiss, they were so real. So it was a number of years after the church of reading tarot, getting into astrology, and spirt kind of started to move around me in ways that made it obvious, girl you gotta get back, you gotta start talking to something again. I slowly developed a much more animistic view of the world and slowly became open to the idea that spirit did not have to be an authority and that I could start tending an ancestor altar, that I could do these different ways of engaging with spirit.

Seeing Jesus, very much seeing him walk through a wall, was harrowing and I was just like, absolutely not, we’re not doing this, no. I wrote about it because I wanted it to stop happening. I think there are a lot of traditions and a lot of understanding of how spirit works that it’s private. You don’t talk about who you have relationship with, you keep this on the DL. I was like, I want it to stop happening. I need him to stop showing up, I want nothing to do with him or whatever version of him is wandering around right now. And so I wrote about it because I was like, I need this to stop happening in my house and I have no interest in developing a relationship with whatever version of Jesus this is. I’m open to spirit again but not to that.

Lorraine: I so appreciate you talking about it all that way. I don’t think it is basic, what you were saying about tarot, becoming the authority of your own life. It is so hard to be the authority of your life. I think for anyone socialized as a woman or femme, we are not given a lot of autonomy. I went from the Catholic church to having a lot of chronic illnesses and being in the medical system, where again, your experiences and your authority over your body are constantly being questioned. So writing my book about chronic illness was very much me deciding, I have the authority to tell this story. But it took years for me to be able to.

Jeanna: I appreciate you sharing that, and you bringing up the medical system. Especially here in the U.S., it’s not in any way going to help someone develop a sense of autonomy. There’s a lot of perverse overlap in folks who have experienced chronic illness and disability alongside folks who have come out of abusive systemic high control families or religion. There’s a weird symbiosis there.

Writing and the Body

Lorraine: My last couple questions are just about your writing process. I’m curious, where is your favorite place to write?

Jeanna: I need to have variety in my day. I do very well when I leave the house. So I have some coffee shops here in the neighborhood, one in particular which is my favorite. It’s all glass windows ceiling to floor, which in this cold is not as fun as other times, cause the heating is an issue, but the afternoon sun streaming into this coffee shop, I find that very, very lovely. And I do have to say this, it’s a shame I’m not traveling a lot lately because I love writing on planes. There’s something about the containment and not having WiFi that’s reliable, that I write really well on planes. I like to write on the train here in New York as well. I’m in this liminal state, I just go into it pretty easily. When I was still working a 9-5 for my first few years in a New York, I wrote a significant amount of the first draft of Heretic on the train.

Lorraine: I love that. That feels like a very New York experience. Ok and last question, what does it feel like to write?

Jeanna: That’s the most lovely and joyous question because writing is the best feeling in the world. I would rather be writing than doing just about anything else. And I say that as an extrovert, so that’s a big deal. The best kind of writing, which to me usually happens with narrative writing, but also can happen in my newsletter, which gets into more explicitly spiritual topics, the best time is when it stops being you. It’s like you’re in flow. R.O. Kwon, who wrote, The Incendiaries and Exhibit, once described it to me, she said it’s when you lose your “I.” And I was like yes, when you lose your I, that is the best feeling in the world. Obviously you’re till there, but you’re just in communion with something else. And to me, it’s why creativity is ultimately a profoundly spiritual practice, because it does feel like you’re tapping into a stream or becoming a part of something that is much bigger than you.

Lorraine: Yes. I love that. And I agree, writing to me has always felt like one of the most potent spiritual practices, where you get in that state where you’re not aware of yourself. I feel like I hear from writers all the time, ‘writing is so hard.’ I’m like, why are you doing it then?

Jeanna: This is also my feeling! There are a lot of things you could do that aren’t this. Even when I’m having resistance or it’s a kind of writing that I like less, I’d still rather be doing it than almost anything else. Life is too short to not do what you love.

Lorraine: Yes. I went to a talk when I was an undergrad with Jonathan Safran Foer, and he said “Writing feels like pulling teeth out of my dick.” And I was like, 1) ew, 2) why are you doing it?! I feel like a message I heard from so many writers is, ‘Writing is so brutal and painful,’ and I’m like, Am I doing it wrong? Yes sometimes it’s hard, yes you can be very self-critical, but it’s still such a joyful process.

Jeanna: Writing itself is joyful. Most of the difficulties I encounter, I appreciate that you named that, because they’re entirely to do with my own self criticism. Usually I’m the one making the writing hard, but it’s not the writing. It’s my particular mindset or things that I’m thinking about, it’s not the act itself.

Jeanna Kadlec is the author of Heretic: A Queer Revolt Against Evangelicalism, Empire, and the Lies We Are Sold and the forthcoming Astrology for Artists. A born and raised Midwesterner, she now lives in New York City. Be sure to check out her Substack, “Astrology for Writers.”

This was a somewhat normal occurrence, since we lived in a rural area replete with coyotes and all our cats were outdoor cats. He went out one afternoon, didn’t come home that night, and I heard the howls and yips of a nearby pack as I was in bed. I was sad, of course, but like I said, not exactly shocked. Every time this had happened we got a new cat shortly thereafter.

Sure enough, the cat distribution system did its thing: two kittens were thrown out of a truck near my grandparents’ apartment building, and they took shelter in the garage. We adopted one of those kittens, a little tuxedo with bright yellow eyes. And because I was fresh from France, we decided to find a French name for him.

I cycled through a few ideas: Chausettes (socks) wasn’t quite right; he was black and white like a cow, but Vache also didn’t fit. I came up with Chouette, which means owl but is also slang for ‘nice’ or ‘great,’ but that was vetoed. Then I thought of the other word for owl—Hibou (pronounced EE-boo).

[Side note: Why does French have two words for owl? I couldn’t tell you. But the difference between them is that ‘chouettes’ are owls without little feather tufts on their heads, and ‘hiboux’ are the owls that have those tufts, almost like ears. One might say, like cat ears. And no, the names are not scientific distinctions between species of owls.]

And so began our family relationship with a new cat, christened Hibou. As you can see from the photo of him as a kitten, he even looked a bit like an owl.

Like the cats who came before him, Hibou slept in the garage and started going outside after a few months with us. He was a voracious hunter, leaving the heads of his prey at the doorstep for us. He got into fights with the neighbor’s cat, a large orange male named Cadenza. He sometimes came home with scratches on his face, but he was clearly going to be a survivor.

And on top of that, he was also probably the friendliest cat we ever had. He almost always came running from the fields when you called his name at night, bounding through tall grass and then trotting up to the door. He was never cuddly, but he loved being around people. Even strangers. Even small children who didn’t know the right way to pet him. He never hissed, never bit or scratched except when someone (especially my dad) would play fight with him, holding up a hand for him to attack. And most of the time, you could tell he was trying not to use his claws.

If there were any downsides to him, it was that he had the most easily upset stomach and was constantly puking. This did not improve no matter how many fancy cat foods we tried on him. The only thing that really sit well was fresh cooked chicken, tuna, or salmon. It wasn’t until much, much later, when he was nearly 15, that I learned he had feline inflammatory bowel disease—which explained all the issues.

When my brother and I both went off to college, Hibou became my parents’ cat, i.e. my dad’s cat. They moved to a suburb of Cleveland and in their new subdivision, all pets had to be on leashes. Including, apparently, cats. So Hibou learned to go out on a harness, with a string attached to a stake so he could wander for a good 10 yards or so. Even with his range limited, he still managed to catch a few chipmunks.

He also liked riding in the car, because car rides generally meant going onto our sailboat. While he did not like sailing, he did like being at the dock. All the fresh air, the different smells, the way a boat is in a liminal state between indoors and outdoors—he loved it.

But when my parents moved onto their sailboat full time, they asked if me and my partner would take Hibou. It didn’t seem fair to bring him along when he hated sailing, which they’d be doing a lot of.

So Hibou became a city kitty, living first in our apartment in Chicago, then moving with us to a house just outside the city, with a fenced-in yard that he could explore again. (Don’t worry, he still went outside in our apartment; he loved sitting on the back deck and going up and down the steps to invade other people’s decks. He was also a big fan of sitting in the open windows and looking down at the street, or chittering at birds that got too close.)

We brought Hibou to Chicago when he was 12, which is already considered geriatric for cats. But he was still plenty active, playing with toys, chasing ribbons around the apartment, jumping up on my desk while I worked.

Unfortunately over the next few years, he started developing some health problems, the most serious of which was kidney disease. This is extremely common among cats; some 80 percent of cats over 15 will develop it. But there was a particularly dramatic incident for Hibou when his blood pressure got extremely high, to the point that his retinas detached and he went blind. We didn’t realize his blood pressure was high, not being equipped with a kitty blood pressure cuff. We only realized something was wrong when he started running into things.

That was the start of a multi-year saga that involved blood pressure medication, regular trips to the vet, and a growing accumulation of pills to help manage the symptoms of his deteriorating kidneys. We were convinced he was on death’s door at least three separate times. Every single time, he pulled through. My partner started saying, “The Devil doesn’t want him.” Or maybe he was an immortal cat, a vampire who fed on only the finest poultry and seafood and expensive kidney-support kibble. Go figure the one dry food his stomach could tolerate was something that had to be ordered with a prescription.

Despite the indignity of having pills shot down his gullet every morning and evening, Hibou was still living his best life (ok, partly because he got Churu treats as part of the pills, and he loved Churu so much. I cannot adequately express how voraciously he devoured his meat tubes). He still went outside, he still sat on the couch with us at night, he still wandered around the house meowing if no one paid attention to him. He got lots of little treats, like bits of bacon and pieces of popcorn and freeze dried strawberries. Up until the last month of his life, he still went outside in our yard at least a few times a week.

But having chronic kidney disease meant there was always going to be a specific end, namely kidney failure. And a few weeks ago, Hibou started having all the symptoms of it. He was barely eating, was peeing everywhere, looked uncomfortable all the time. He’d lost a lot of weight and got very scraggly because he wasn’t grooming himself. And he started to smell bad—a sign that the kidneys are no longer filtering anything out of the blood. We knew it was time to say goodbye.

A very nice home euthanasia service came to put him to sleep on the couch, so he didn’t have to go to the hated vet’s office. And then I spent the next three days crying a lot. It’s been more than a week and I still think I’m going to see him when I get up in the morning. All these little routines from my day are no longer happening. No pills to give, no messes to clean, no kitty to hoist onto the couch like he’s a sack of potatoes.

Hibou was with us for almost 20 years. That’s more than half my life. He’s been a part of my family for every big thing that’s happened since before I graduated high school. He was there to plop on the couch next to me, to sometimes curl up on my legs, to offer comfort when I was feeling sick or sad. He had a delightful personality, a love of food (despite most things making him puke) and a deep appreciation for the great outdoors, even if it was only via sniffing the air from an open window.

That’s the thing about animals. They’re so present in a way that we modern humans often struggle to be. Seeing him go absolutely feral when we were cooking chicken or turkey or bacon, because that smell was the only thing that existed in that moment, and it was the best smell ever. Or watching his little nose investigate the changing smells of spring all around the yard. Even when he was no longer hunting, he still knew exactly which bushes the chipmunks lived in. And he was keeping an eye on them.

I’ve never before had an old cat. I’ve never watched one get less and less active over time, seen the ways they adapt to a changing body, helped them stay as comfortable as possible. It was often gross (so much pee to clean up; and then he got fleas and needed a bath), and sometimes sad, but mostly it felt like a gift. When you adopt a pet, you enter into an agreement to care for another creature, one with whom you can’t communicate. There’s nothing you get in return but companionship and maybe the heads of dead rabbits. (And really expensive vet bills, if they live long enough.)

To me, so much of the magic of having a pet is precisely in this unequal exchange. Cats don’t care about economic productivity or your salary or the size of your dwelling. They just want food and shelter and, sometimes, your affection. (Some cats would probably prefer their humans’ indifference. Some really mean cats would like to hunt and eat you.) Taking care of Hibou never felt like a burden, even when it took a lot of work. He was part of the family, and his needs changed as he got older, and that was fine. I was just happy to have him around. It’s a reminder to myself that even if my needs change, that doesn’t mean I’m a burden. It means I’m a human with a complicated body, in relationship with other humans. We all need each other, even those of us in “normal” abled bodies.

I loved Hibou, and I miss him a lot. I’m glad he’s not suffering anymore. And I’ll always be grateful that I got nearly 20 years with this little gremlin. He was the best kitty anyone could ask for.

Anger is such a high-energy emotion. And as someone mentioned during the event, talking about our anger with friends can sometimes serve to augment rather than diminish it. Which is not to say that venting isn’t useful! But I think we need more than simply the act of being witnessed or commiserated with. We need to move the energy through our bodies.

In the past, I used to do this by kickboxing and sword fighting. There’s nothing like hitting a punching bag to move anger through your body. But then my joints got inflamed, and punching things or swinging my sword at someone else’s became a more costly endeavor. That’s why we decided on smashing ice as our activity. It still unleashes some of that destructive energy without doing any real harm. And let me tell you, it is satisfying to take a hammer to a block of ice. I felt giddy afterwards.

During the ritual, I shared a quote from nonviolence activist Barbara Deming. She was writing about the ways that anger can be used to harm others, but it can also be used to form connections and bring about change:

“Our task is to transmute the anger that is affliction into the anger that is determination to bring about change. I think, in fact, that one could give that as a definition of revolution.”

Anger can be motivated by fear, and it can be motivated by hope. We all need to learn to differentiate between the two, because the former is often deadly, while the latter has the potential to be revolutionary, as Deming says.

Is it revolutionary to express anger about the medical system that often harms women, femmes, and gender nonconforming people? Is it revolutionary to tell each other how angry we are about government oppression and the attacks on our neighbors? Is it revolutionary to smash a little block of ice?

Maybe? A lot of movements have used consciousness raising to make people aware of different social and political issues, and to show that our personal experiences are affected by these systems of powers. Talking to other people about the mistreatment I’ve had at the hands of doctors helps me contextualize this not only as an individual experience, but as a systemic problem.

But of course we can’t stop there. The next steps are to find ways to change those systems, to build new ones. And this is hard work. Work that requires community, and communication, and the ability to overcome our differences. But by starting with a common base of processing emotions together, I think those communities start with a stronger foundation.

Share

This is the third seasonal ritual the two of us have organized (the others were for grief and joy), and every time we do them, I come away feeling lighter. There’s something about being part of a temporary community and making space for big, often difficult emotions that really makes me appreciate humans as social animals. I think that sociality gets obscured by the perversely named “social media” so many of us have incorporated into our daily lives. Sure, in the early days of Facebook, it was more for connecting with other people in your university and staying in touch with friends from your hometown and organizing parties and events. Now it’s polluted with AI spam and meme accounts and feels practically unusable.

So we got Instagram and Twitter and TikTok and the plethora of other apps and sites that have followed. And each of these had their moment in the sun where they felt like a public commons, a place for gathering and sharing asynchronously—until each succumbed to the pressures of capitalism and enshittification (a term coined by Cory Doctorow with an excellent breakdown of it here). Now all of these digital media mime being gathering spaces while not-so-secretly amassing troves of data about their users and passing it off to various corporations and state surveillance apparatuses.

I’m getting off track. The point I want to make is that we need community, but we can’t outsource the work to giant tech corporations. We often have to create it ourselves. Anna and I both felt that there was a need to mark the specific experiences of chronic illness and disability with rituals, so we worked hard to create those rituals and make a space where people could gather to do them together.

The same is true of Parallel Play, a queer Chicago organization that organizes Covid-cautious events. The founder, Anna De Ocampo Kain, saw a need that was going unmet and moved mountains to make things happen. Now there’s a large volunteer base that helps organize and run events, whether they’re drag shows or craft nights, and people can attend without worrying about getting sick with Covid.

And now, Anna and I have made an actual zine with our rituals that anyone can download or purchase in physical form! I’m so proud of the work we put into it: creating rituals that we thought would be meaningful, collaging the cover art, experimenting with format. If you want a print edition, orders are open till February 14. The digital version will always be available for download, but we’ll reopen print orders again in the spring around the time we do our next seasonal ritual.

May you find ways to transform your anger into change, may you find your community, and as always, stay safe out there.

Then, Donald Trump won the presidential election.

I remember a lot about that day with horrible clarity, but one moment that sticks out was when we were in the kitchen, trying to figure out what to make for dinner. My partner said, “You can change your mind. You don’t have to go work in D.C. anymore.”

But I wanted to go. I wanted to be in the center of the political machine, doing something that felt important. I wasn’t yet sure what that would look like day-to-day, but I needed somewhere to put all my angry energy. I needed to feel like I was taking action.

What followed were twelve months of relentless work, a publishing schedule that was so grueling I have no idea how I managed it. I researched, wrote, and edited three 1,700-word stories every week. I was doing interviews constantly, researching new ideas and historical anniversaries in spare moments, occasionally picking up breaking news (like when a noose was left in the National Museum of African American History and Culture).

I wrote about anti-immigrant parties of the U.S.’ past, an interactive exhibit on refugees at the U.S. Holocaust Memorial Museum, and the controversy over Confederate monuments. When I was off work, I was going to protests, and helping non-journalism friends develop better media literacy, and training for a triathlon because I couldn’t stand to stop moving even for a moment.

This was the same timeframe as the Washington Post’s decision to put the slogan “Democracy Dies in Darkness” at its masthead, and the work of journalism felt like it might conceivably be able to save the world, or at least reverse the course we’d been set on. In retrospect I see the naïveté of this belief, but I also think at its best, journalism can hold power to account, can provide the citizenry with vital information, can make a tangible difference in people’s lives.

The president told thousands of lies, and attacked the media, and saber-rattled at other countries, and spewed vitriol about immigrants and women and disabled people and basically every minority you can think of. And I was flying back and forth between Chicago and D.C. every month, and staying on top of my ridiculous writing schedule, and occasionally doing events to promote my book that was published in 2016, and trying to come up with ideas for another book proposal.

It was an exhausting pace. Maybe it’s no surprise that it didn’t end up being sustainable.

Sometime during training for the triathlon, backpacking around Yosemite, and competing in the triathlon, I tore the meniscus in my right knee. It’s a donut-shaped bit of cartilage that cushions the joint and oo, buddy, when I tell you that it hurt. It hurt to walk, to go up and down stairs, to stand up for too long. I did physical therapy for several months, but the doctor ultimately decided I’d need surgery.

At the end of my year in D.C., I put in notice that I was quitting my staff writing job. Me and my partner didn’t want to do long-distance for any longer, he couldn’t move to D.C., and there was no possibility of me working remotely. I moved back to Chicago, got knee surgery, grappled with some health issues that arose because of the surgery, and immersed myself back into freelancing.

All the while, several yet-to-be-diagnosed health problems were causing havoc. And then the Covid-19 pandemic hit, my body really lost its shit, and I had to make some major lifestyle changes.

I’m thinking about that frenzied period of time right now because the world has only gotten more chaotic, dangerous, and self-destructive. Minneapolis is a six-hour drive away from me, which feels so very close. My brother lived there years ago, and my sister-in-law only recently moved away. I know people in the Twin Cities, and I’m scared for them. It’s worse than things were in Chicago, and they were plenty bad when ICE was terrorizing people here, as I wrote about last year.

Only this time around, I’m not a staff writer for any major publication. Instead, I’m preparing for my book about climate change and chronic illness to come out in April, and working on some other longer-term projects. I don’t have the time, energy, or capacity to do the same level of freelance hustling I was doing in 2018 and 2019. So I’m often looking at terrible things happening, feeling totally helpless.

That’s the point of all this, I know. To make people feel helpless, like the arrests and detentions and kidnappings are a foregone conclusion, like we’re going to lose no matter what. We seriously think we’re going to win bringing whistles to a gun fight?

But what the people of Minnesota (and Maine, and LA, and Chicago) prove is that yes, that is how we win. We are not helpless. We will stand with our neighbors in whatever way they need when a corrupt government is hellbent on harming and illegally deporting them.

I recently read Robert Paxton’s The Anatomy of Fascism, in which he describes the conditions the led to Nazi Germany and Fascist Italy. It’s a great work of scholarly research and history (and yes, Paxton, now in his 90s, believes the U.S. has slid into fascism). One of the things that struck me was Paxton’s description of how many people had to go along with these regimes in order for them to continue as long as they did.

“The Gestapo was so well supplied with denunciations from zealous (or jealous) citizens that it could get along with a ratio of about one police office for ten thousand to fifteen thousand citizens, far fewer than the STASI required in the postwar German Democratic Republic.” — The Anatomy of Fascism, Paxton, p136

Of course, the government doesn’t need denunciations now, seeing as ICE has a host of phone and internet surveillance tools that allow it to track people across entire neighborhoods.

But what gives me hope is that people aren’t denouncing one another. Despite guns in their faces, despite teargas being released by schools and homes, despite citizens getting murdered—thousands of people are still showing up to help in whatever way they can. Even with the risk of arrest or injury or death.

Share

Away from Minnesota, there are opportunities to donate to various fundraisers and reminders to call our representatives to reject funding for DHS (5 Calls is my favorite app for this). There are Observer trainings so that people can learn the best ways to safely monitor and report ICE activity. And there are journalists covering all of it on the ground, occasionally getting arrested and pepper sprayed for their efforts.

I see all this and I think, But what do I do as a writer without a publication, an author with a book largely unrelated to anything happening now?

Some of that is selfishness, I think; wanting to pat myself on the back and make myself feel better by go-go-going, so that I don’t have to impotently watch the horrors. But there’s also a genuine question in that thicket for me: what is the work of writers in a moment of fascist violence?

I’ve been reading Omar El Akkad’s excellent book on the Palestinian genocide, One Day, Everyone Will Have Always Been Against This. He documents a lot of his work as a journalist and writer, and asks a similar question:

“What is the work writers do? Not the writing, not the thing that lives on—the work, the inward conversation that must be had again and again and again before even a modicum of meaning arrives on the page.”

What he seems to be saying is that there is the work of documenting what’s happening in any given moment, but then also the work of making sense of it. But how do you do that when what you’re witnessing is utterly senseless? A little later in the book, he offers an incredible answer.

“What art does is meet us at the site of our insanity, our derangement, the plainly irrational mechanics of what it means to be human. There comes from this, then, at least a working definition of a soul: one’s capacity to sit with the mysteries of a thing that cannot in any rational way be understood—only felt, only moved through. And sometimes that thing is so grotesque—what we do to one another so grotesque—that sitting with it feels an affront to the notion of art as a conduit of beauty.

Still, sit. Sit.”

I know he’s not using the word “still” to mean “stillness,” but that’s another thing I’m taking away from his exhortation. That one cannot always be in motion, taking action. There must be moments of being still, of simply sitting. Of observing and being with the world as it is, so that we might imagine and create a world as we want it to be.

I had a conversation recently with my literary agent about the things to emphasize when promoting my new book. “People want hope and healing and community,” she said. (Probably important to note that she’s based in the Twin Cities.) It can be hard to offer those things in the face of attacks on immigrant communities, and climate change, and the rhetoric of eugenics coming out of HHS. But writing my book did make me feel more hopeful and less alone. Just sitting with my body, the site of all these calamities, offered a sense of steadiness.

I’m still not sure what to do about any of this, apart from the little things of calling senators and making donations and checking in with friends. But I’m holding onto El Akkad’s reminder of sitting with mystery, even when it’s horrific. I will sit with it, and I will dream of how it could be better, and then I will share those dreams with others, and see what we can do to make it so.

The Proposal (or, how I got a book deal)

Let me just start by saying the publishing industry is weird. It’s very opaque to outsiders (and often to those of us who are actually inside it), it moves very slowly, and a lot of it is about making personal connections. For example, I’ve been represented by my literary agent, Jennifer Carlson, since shortly after graduating with my masters. I met her through one of my professors at Columbia.

I’m not going to write a whole primer here on what it takes to find an agent when you have to cold query dozens or even hundreds of people, though I’ve been through that process for my fiction. If you want to learn more about it, here is an excellent guide to that process.

Editing

The Complete Guide to Querying Literary Agents

Read more

6 months ago · 1 like · RM

What I want to describe is how I went about writing the book proposal for Body Weather.

A book proposal is a combination of a writing sample and a marketing document used to sell nonfiction. If you’re writing straight-up memoir, you usually have to write the entire manuscript before a publisher will look at it, the same as with fiction. With essay collections, it’s often similar—you need a substantial amount of writing to be done before it goes from your agent to editors. For books like mine, which is somewhere between essay, memoir, and reported nonfiction, it’s a little more complicated.

The original idea I had was centered around the question of why women are so much more likely to develop autoimmune diseases than men. I did a lot of research on the issue, talked to some experts, and tried to write up a proposal — and it just didn’t work. I couldn’t get it to come together.

I realized the problem was that I was excluding myself from the story. But I live with five or six autoimmune diseases (depending on how you’re counting), so avoiding discussion of my own experience felt like I was lying, to myself and to the reader.

I sat on the idea for months and got nowhere. Then one day, my partner coined the phrase “body weather” to gauge how I was feeling. It was such an immediately useful metaphor that it illuminated a new pathway to telling the story I wanted to tell. I realized I could use my experiences as a jumping-off point to explore the connected issues of chronic illness/disability and climate change.

I began pairing up my body systems with elements of the weather: heart-storms, uterus-floods, thyroid-temperature, etc. And suddenly, there was the perfect combination of freedom and constraint to work within. I’m all about a good structure, and once I find it, the project becomes way more feasible.

Which brings me back to the proposal. It included an overview essay (introducing the project, talking about intended audience, my platform and expertise), marketing details, a chapter outline for the whole book, and a very long writing sample. I wrote almost half the book for that sample, which is unusual, but again, my book was somewhere between the memoir/general nonfiction categories, so my agent felt we should hedge our bets with more writing rather than less.

After some edits and a little back and forth, my agent started sending it out to editors. This is always the most painful process for me, because you tend to get a fair amount of rejections and there’s always the possibility the book just won’t sell. Luckily, we found an amazing editor at Beacon Press who loved the concept. I didn’t get a large advance, but I wanted to write the book, and I really appreciated the Beacon team’s enthusiasm. They seemed like good people to work with (which has proven to be true!). So I signed the contract in September 2023 and got to work.

The takeaway: Find a compelling angle for your story. It doesn’t have to be memoir, but you should have some unique insight or expertise to bring to the subject that no one else can offer.

Balancing Book Writing, Work… and My Body

Of course there was a a lot of celebrating that happened with the book deal, as with all book deals. But then came the bigger task of … actually writing the book. As excited as I was to tackle the project, I also had a full-time job working as a writer, producer, and occasional host for a video production company. We made educational science videos and created an educational gameshow on archaeology. (If you want to see me be an absolute dingbat while learning to throw a spear, make stone tools, and fire pottery, you can still watch the series on Nebula.)

To make matters more complicated, when I signed my book deal in September I was scheduled for pretty major hip surgery in October, which would require me to be on crutches for three weeks, with my hip immobilized by a brace for that entire time and then some.

Read more

But while I can’t remember exactly when the comment first started coming, I can tell you that it hasn’t stopped. I’m in my mid-30s now, and if anything, I hear it more often than in my 20s—though this is maybe because I’ve accumulated more diagnoses since that decade of life, so the list of things to go over in each appointment is longer.

There’s the phlebotomist who asked why I was getting so many vials of blood drawn, then commented that I’m “too young to have so much going wrong.”

The ENT who realized we were born the same year, ten days apart, and this nearness in our age was so jarring that he blurted, “But you’re too young for all this.”

The nurses and anesthesiologists and orthopedic surgeons and doctors, all producing a chorus of “but you’re too young!”

As if youth is some magical shield against illness and disability.

This comment has always made me feel bad, but the reasons why I feel that way have changed over time. At first, I felt bad because they seemed to be implying I was doing something wrong. That it was my own fault I got sick, either because I was too stressed, or not following a sufficiently healthful diet, or not exercising the right way, or not meditating, or not taking the proper supplements, or or or or or.

If I could go back and rescue my younger self from this line of thinking, I would absolutely do so. It’s true that our behaviors have a direct impact on our health, whether that’s smoking or drinking or spending hours on the couch mindlessly doomscrolling. But what that self-blame (and societal blame) ignores are all the ways that our health is not in our control. The pollutants we’re exposed to, the racism and discrimination we experience, our access (or lack thereof) to fresh fruits and vegetables, our socioeconomic status. Our freaking genes!! There is literally nothing I can do about being born into a family with high rates of autoimmune disease.

Share

For years, I beat myself up because I believed I was “too young” to be so sick. And I pushed through my symptoms, and exercised more, and worked harder, and guess what? I got sicker.

These days, this comment makes me feel bad because it reflects the pervasiveness of the belief that youth confers invulnerability. And this belief is flat-out ridiculous. You know what the child mortality rate was for the vast majority of human history in every part of the world? Around 50%. One out of every two children died before reaching the end of puberty because of illness or injury or lack of food or conflict. Even in 1950, the mortality rate for children was still 27%!!!

Why have survival rates changed so much for the better? Some of it is greater access to food and clean drinking water. Some of it is improved medical treatments and maternal care. But the biggest single factor in extending a person’s lifespan beyond childhood is access to childhood vaccinations.

And boy does this ever get me heated up when I see the amount of disinformation being circulated by government officials like RFK Jr. and his cronies, who have overtaken the CDC and changed the guidance for the childhood vaccination schedule. With absolutely no evidence that the previous guidelines caused massive harms, and an abundance of evidence showing that lack of vaccination can cause great suffering.

Vaccinations have saved hundreds of millions of lives. Refusing to take them can cause very real harm to individuals and communities because, again, young people are vulnerable! Take the ongoing measles outbreaks, for example. Measles was considered eradicated in the U.S. in 2000. Now we’re seeing thousands of cases across the country, with multiple children having died.

What’s more, being infected with measles can have long-term consequences, like blindness, deafness, heart damage, immunodeficiency, and brain damage. This is true of many illnesses, be it the flu (which can lead to myalgic encephalomyelitis) or Covid (a reminder that Long Covid is now the leading chronic illness among children, coming out ahead of asthma).

“Ok,” I hear you saying, “children are vulnerable so their age doesn’t confer any special benefits. It might even put them at greater risk. But young adults are different.”

I will allow that this is mostly true. The very young, the very old, and the pregnant are generally considered the populations with the highest risk when it comes to disease and mortality. BUT. This is not always the case. Consider the 1918 influenza pandemic that killed somewhere between 25 and 50 million people worldwide. This strain of flu has always been unusual for its virulence, but also for the fact that young people aged 20-40 made up a disproportionate number of the deaths. One study has found that the peak age for death in the U.S. and Canada was 28, normally the prime of one’s youth.

Why were young adults so vulnerable in this pandemic? It’s still being debated, but there’s a possibility that exposure to an earlier strain of flu dysregulated their immune systems and made it so they couldn’t fight off the disease. Another theory is that their immune systems overreacted to the virus, and that overreaction is what killed them. Whatever the answer, the outcome remains the same: being a young adult was more dangerous than being older.

Look, I’m not trying to be obtuse or needlessly critical of overworked medical professionals. I understand where the perception of “youth as health” comes from. The process of aging often comes with lots of challenges, whether it’s increased risk of heart attack and stroke, or the prevalence of osteoporosis and mechanical arthritis, or the simple fact that one’s immune system stops working quite so well. When doctors say “this shouldn’t be happening to you,” they’re expressing dismay at a disrupted norm.

So I get it. I do. I, too, wish I did not have so many chronic illnesses to manage. I, too, wish children didn’t get sick from cancer. Honestly I wish all of us could get through life with slightly less suffering, but that’s just not the way it goes.

It’s just that I have no idea what to say or how to respond when doctors express their dismay. I’m sorry my chronic illnesses make you uncomfortable and disrupts your worldview? Or, Yeah it’s not fair, but you know what they say? Or just, Thanks?

Because I want to assume the best intentions here, I really do. It’s just that this statement — “you’re too young for this” — seems like it’s more about making them feel better than about comforting me. I’d much rather have the medical person say something like, “That’s a lot, it sounds hard.” Or even better, “How are you coping with all these things? Is there any additional way we can offer support?”

What I would like to leave behind for 2026 is the standard “you’re too young for this!” Clearly, I’m not. I’ve been sick since my 20s and there’s no sign that that’s going to change. Sometimes it really sucks, but mostly it’s just my life and generally I enjoy my life.

No one is guaranteed health or being spared from illness and injury. There are a lot of things we can do to make our world better for all people (though we’re going in the opposite direction at the moment…), but death will still come for us all. And I’m here to remind you: you’re not too young for bad things to happen. Sometimes they do. And we find communities, and learn about disability justice, and move on from there. Illness and disability are just another part of life.

• First, I’m going to turn on paid subscriptions this year, probably at the end of January. I know everyone has so many things they subscribe to, be it newsletters or Patreons or streaming services, and I don’t want to impose an undue financial burden on anyone. Most of what I write will continue to be freely available, but I’ll start having some bonus material that’s paywalled, like writing tips, book reviews, and prompts and Q&As with other writers. I’m hoping to do a series this year about “Writing the Body,” in which I’ll explore the work of other writers who engage with this subject, and have conversations with them. For subscriptions, I’ll be charging $5/month or $50 a year.

• At the end of January, a friend and I will be hosting a ritual for disabled anger. We’ll play with rocks and smash some ice and vent about insurance premiums and shitty doctors and whatever else has been weighing us down. We’ve done two other rituals so far, and participants have really enjoyed them. This is a virtual event on Saturday Jan. 31 at 8pm EST/7pm CST/5pm PST. You can sign up here.

Now, on to the main event.

There’s this romcom that came out more than a decade ago called “About Time,” starring Rachel McAdams and Domhnall Gleeson as the leads. The main character, Tim, learns that men in his family have the ability to time travel, which he then uses largely to pursue true love and a happy family life. It’s cute, though if you think too hard about the way Tim is manipulating time and his future wife, it gets kind of creepy. But then there’s Tim’s father, who teaches him how to time travel, and who explains that he largely uses it not to interfere with other people’s lives, but to read more books.

Now that, I thought, is definitely what I’d use time travel for. Forget killing Hitler; I just want more time to finish all the classics.

(One day I will definitely finally finish the last five hours of the War and Peace audiobook narrated by Thandie Newton, which is 60 hours and 14 minutes long.)

I’ve said it before and I’ll say it again: one of the great tragedies of mortality is that I won’t have time to read all the books I want to read. I’m a pretty fast reader, and I still only get through about 100 books on a good year. I also love to reread books, which means I’m spending some of my book-hours on things I’ve read before. This brings me so much pleasure that I’ve made peace with the fact that it cuts into the discovery of new works. I learn things about the books every time I revisit them—maybe the art of rereading deserves its own post at some point.

But as I was reviewing the books I read in 2025, and comparing that to what I’d read every year since 2020, it occurred to me that my to-be-read list is always a bit haphazard. I read end-of-year recommendations from NPR and other outlets, I follow the “most anticipated” lists for each of the seasons, I get newsletters from indie publishers about what they have coming out. I also get recommendations from friends and family, and have been a member of a book club for a decade, so some of my reading comes from those sources as well.

Over the last couple years, I decided I wanted to make an effort to read more poetry, more international fiction, more graphic novels, and more middle grade fiction. (Yes, I read kids’ books, because some of my favorite authors are people like Madeleine L’Engle, and I want to know what young people are reading right now.) But other than that, I’ve chosen books either because they relate to something I’m working on or because I liked their vibe.

This year, I want to be a little more intentional. So here are some of my specific goals and my reasoning behind them.

Five Essay Collections/Memoirs in Essay: As I’ve moved from purely journalistic writing to more essayistic work, I’ve felt a real lack in my knowledge of the form. Some great things in this category I’ve read in the past few years include Jenn Shapland’s Thin Skin, Tessa McWatt’s Shame on Me, Mary Oliver’s Upstream, Olivia Laing’s Funny Weather, Sarah Aziza’s The Hollow Half and Jeanna Kadlec’s Heretic. I want to continue exploring this genre to see the way writers try to understand the world and their place in it—a question with infinite answers.

Five Books of Poetry: I’ll confess, I have a hard time with poetry. I want to be someone who reads poetry and is moved by it, but a lot of times I feel like I’m not smart enough to understand the form and content. And yet, one of my favorite stories is The Odyssey, which is just an epic poem. So I’ve been trying to get over my hangups and find poetry that really speaks to me. Some excellent examples of this lately have included Sharks in the Rivers by Ada Limón, Deaf Republic by Ilya Kaminsky, and Bluets by Maggie Nelson. I want to keep finding work that opens up language for me in new ways.

Five Books by African Authors: As I mentioned above, I’ve been trying to read more international fiction the last few years. I’ve read a lot by East Asian authors, Latin American authors, and European authors. But I’ve not done a great job with authors from different African countries, apart from some books by Ethiopian and Nigerian writers. Seeing as it’s the second-biggest continent in the world, I need to do a better job. If any of you have recommendations, please let me know! As for what’s been great from other parts of the world, I loved Cantoras, by Caro de Robertis (Uruguay), Taiwan Travelogue by Yang Shuang-zi (Taiwan), and Greek Lessons by Han Kang (South Korea).

Five Graphic Novels: Anyone who says they don’t like pictures in their books is lying. It is a *delight* to have pictures alongside the words. And graphic novels are the epitome of this, with art and language working together to evoke a mood, tell a story, reveal characters. I love discovering different art styles and seeing the way the writing and pictures come together. Some of my favorites from the last few years include Shubeik Lubeik by Deena Mohammed, Cyclopedia Exotica by Aminder Dhaliwal, Blurry by Dash Shaw (we met at Yaddo and his work is amazing!), and Mis(h)adra, by Iasmin Omar Ata.

Five Weird Books: I want one category that’s purposefully vague, in a you’ll-know-it-when-you-see-it kind of way. I love weird books, but I don’t always know what’s going to be weird until I pick it up. Some get advertised that way, but they end up just being gross horror (one of the few genres I tend to skip). I want weird as in a complete surprise, unlike anything I’ve read before, totally unexpected. Some that have scratched that itch recently include Bunny by Mona Awad, Popisho by Leone Ross, The Emissary by Yoko Tawada, and Land of Milk and Honey by C. Pam Zhang.

All told, that’s 25 books of my 100-book allotment. A quarter. For the rest, I’m sure there will be a good amount of nonfiction for research purposes; fantasy and sci-fi for pure enjoyment; and hopefully a few classics (really trying to finish Moby Dick in the next few months).

As for my reading in 2025, here, in no particular order, are fifteen of my favorites that didn’t make it into any of the above lists.

• Little Blue Encyclopedia (for Vivian), by Hazel Jane Plante

• James, Percival Everett

• No Less Strange or Wonderful, A. Kendra Greene

• The House in the Cerulean Sea, TJ Klune

• North Woods, Daniel Mason

• Death of the Author, Nnedi Okorafor

• The River Has Roots, Amal El-Mohtar

• The Murderbot Diaries (series), Martha Wells

• Always Coming Home, Ursula Le Guin

• The Argonauts, Maggie Nelson

• Stag Dance, Torrey Peters

• Wild Dark Shore, Charlotte McConaghy

• How Far the Light Reaches, Sabrina Imbler

• The Mourner’s Bestiary, Eiren Caffall

• Summerwater, Sarah Moss

I’d love to hear if you have any particular favorites from 2025, or recommendations that fit into the categories above! May your 2026 be blessed with an abundance of good stories and beautiful words.

But as he got distracted by family conversations and stopped playing, I continued my journey and discovered things like nyctalopia (night blindness) and nyctinasty (plant movement that occurs in response to changes in light intensity). How beautiful that such words exist, that you can express specific experiences so precisely! I haven’t had a reference dictionary for my office in years and suddenly couldn’t understand how I’d lived and worked for so long without one.

(Side note: there was a fun article about the history of dictionaries and the internet in a recent issue of The New Yorker that I highly recommend if you want to learn more about the controversy between prescriptivism and descriptivism. No? Just me? Well you also get to revisit “cheugy,” slang that existed maybe a million years ago, or maybe just ten.)

The other present, my pen, had to wait till we returned home from visiting his family before I could make use of it. It was a fountain pen and I hadn’t brought any ink to fill it. I have maybe a half-dozen other fountain pens and most of what I write starts off by hand, so they all get regular use. Back at home, I filled the cartridge with a purplish-blue ink called Jacaranda. I marveled at the smooth flow as I wrote with my new pen, the bright ink invisible under the nib until it made contact with the paper. I’d never before seen a pen designed quite like this one, and was immediately besotted. There are few pleasures as great as feeling words glide to life below my hand, hearing the light scratch of the nib on paper. It almost doesn’t matter what I write, just that the words exist.

Share

There was a journaling prompt this week on Suleika Jaouad’s Substack about where we find the sacred. For me, it is often in writing. What an incredible invention, the ability to take the ephemeral expressions of language and preserve them in this static form. I have words put down by my own hand going all the way back to third grade, my oldest journal. My handwriting is surprisingly similar to how it looks today: neat, small cursive, the letters upright. Any embarrassments I find in revisiting an old version of myself are always outweighed by the wonder of having this ongoing conversation.

And then beyond my own words, there’s the writings of hundreds of thousands more people, in books and letters and lists and poems. Maybe that’s why libraries and archives also feel like sacred spaces to me.

When I’m in a writing drought, like I have been for most of December, I don’t feel fully alive. I’m on the edge of life, but not in it. Maybe this sounds dramatic, but when I was in college and struggling to decide between what seemed like a practical path (law school) and something more aligned with my heart (journalism school), a teacher gave me this advice: if you’re a writer, you can’t not write. And that’s how it’s felt for as long as I can remember. I can’t not write. Which makes me feel endlessly lucky that this writing is my job as well as my vocation.

But also, sometimes, that becomes a little confusing. There’s a Gospel story about Jesus throwing merchants and money changers out of the Temple in Jerusalem that gets at my feelings.

“And when he had made a scourge of small cords, he drove them all out of the temple, and the sheep and the oxen; and poured out the changers’ money, and overthrew the tables; And said unto them that sold doves, Take these things hence; make not my Father’s house a house of merchandise.”

— John 2:15-16, King James Bible

I’m not a practicing Catholic anymore, but I understand the desire to keep commercialism away from the sacred and divine. Financial considerations seem crass and debased compared to the stirrings of the soul. But I’m also not interested in being a starving artist (even if I thought it was romantic as a teenager obsessed with the musical “Rent”).

Art in all its forms is a cornerstone of thriving societies. We need beauty and strangeness and work that makes us feel. I want to write and I want to have the means to live off my work. Navigating the market is tricky sometimes, but I’d rather play that game than never share a word of my work with anyone.

I’m thinking about all these intersections—the sacred and the profane, reading and writing, the work and the marketplace—because they continue to be live questions for me as we move from 2025 to 2026. It was a big year for my writing. I finished a book that’s deeply personal and took everything I had to write. And it’s coming out in April, only four months from now, which seems almost too soon.

But there’s also a big new project coming up this year that I’m excited to share more about soon. My hope is that it will continue pushing me to grow in my craft, and that it’ll be a new way of exploring language as sacred and mundane.

I’ll leave you with that teaser for now. I hope the holiday season has treated you kindly and that you’re finding your own ways of engaging with whatever feels sacred.

“I tried the treatment for it,” I told her, “but the side effects were annoying and I decided it wasn’t worth it. Also, getting injections in your throat—not great. Do not recommend.”

Her eyes got wide and she nodded. “I totally understand. I had to get an injection in my eye and the first two times they tried to do it, I passed out as soon as the needle was close to me.”

Commiseration over, she sent in the doctor, who, this time (thankfully) was not going to be putting needles anywhere near my body. In the past, she’s done steroid injections into my SI joint (where the hip meets the spine) to manage arthritis pain. They’re very effective … and they don’t feel great.

The two things I am most consistently grateful for in chronic illness life is that I have good veins (as in, they’re easy to draw blood from) and I’m unbothered by needles. I don’t like being pricked like a pincushion, but I’ve never fainted or grown nauseous to the point of vomiting. I have friends who turn black and blue with the number of tries it takes for phlebotomists to find good veins, and others who consistently pass out when approached with needles. Considering I get blood drawn probably a dozen times a year and give myself monthly injections, I am counting my blessings.

As it turns out, I should probably include hypodermic needles among those blessings. I didn’t realize the hollow needle was only created in 1844 (though an earlier version from 1656 was made with a goose quill as the needle and animal bladders as the syringe—thank you, Francis Rynd, for improving on that design; I can only imagine being stabbed in the neck with a goose quill). That’s less than 200 years! We’ve had vaccines for longer than we’ve had hypodermic needles to deliver them through!

Hypodermic needles seem so pedestrian because they’re ubiquitous. Whether it’s donating blood, getting a flu shot, or having routine lab work done, all require hypodermic needles. They get beneath our skin without introducing much risk of infection (as long as the area is sanitized beforehand) and the minor wounds they cause heal within days. Before hypodermic needles, there was no good way to introduce medicine into a person’s body other than through the orifices, and blood transfusions were much more difficult to manage.

But the uses for these needles go far beyond medicine. Researchers in fields ranging from biology to archaeology use hypodermic needles to do tests and experiments. I got to try this out for myself a year ago, when I did a biomedical fellowship at the Marine Biological Laboratory in Woods Hole, Mass. As part of the program, my group did a hands-on experiment using CRISPR gene editing to modify the genome of embryonic zebrafish. This required using teeny, tiny needles to fill the little fish with the gene-editing solution.

When I say tiny, I mean tiny. The tips practically disappeared if you looked at them with your bare eye. We used microscopes to do the injections, and the needles were held by mechanical dispensers, so that we only had to turn a knob to slowly push the tip into the zebrafish eggs. This level of precision makes sense when you realize that the eggs are about the size of a period at the end of a sentence.

I won’t go into the full details of CRISPR technology (if you want a handy explainer, this article is a good one), but the basic idea is that it directly edits the DNA of an organism. In the case of our experiment, we did one batch of CRISPR aimed at knocking out the gene for pigment in zebrafish, and another for removing their eyes. Did I feel bad for the poor little fish? Yes. But was it cool to see the effects of successful gene knockouts as the fish grew? Also yes.

The technology has already been used for an FDA-approved treatment for sickle-cell disease, and works by modifying a specific gene that contributes to the condition. And as you might guess, the treatment does involve more needles and intravenous infusions.

Once I started thinking about needles in science, it was a small leap to think about their role in art—specifically, tattooing.

The one place that I will excitedly go to be stuck with a bunch of needles is a tattoo parlor. And I absolutely would’ve thought that the needles used there are very similar to the ones you find in doctors’ offices and labs. But as it turns out, tattooists don’t use hypodermic needles. The needles that deliver ink aren’t hollow and filled with whatever color you choose. Instead, they’re coated in ink and when the needles vibrate in and out of your skin, the vacuum created by the needle’s departure siphons up the ink. So it’s the negative pressure left behind by the needle that allows ink to find its home under your skin, rather than the positive pressure of a syringe being pushed to deposit a medication.

Share

I was honestly flabbergasted by this when I first read about it. Do you mean to say we could be giving people flu shots by dipping a tattoo needle in flu goop and then jabbing people a few dozen times? I’ll be honest, I couldn’t find anything about the medical soundness of this method online, and I doubt most people would want to get a mini flu tattoo instead of a single jab that only takes seconds and barely stings. I don’t find tattoos excruciating, but of course it still hurts a bit to have needles dragged back and forth over your skin as they deposit ink. Our current vaccination system is a whole lot easier (and almost certainly more effective, but as far as I know there are zero experiments on the subject).

I started down this rabbit hole of needle research because I’m having a couple procedures in the coming weeks that involve needles in very unpleasant places. I know I’ll be fine; I’ve had lots of injections in my joints and my muscles and my organs over the last ten years or so. But I wanted to better understand the history of this technology that so readily allows us access to the inner parts of ourselves.

I know x-rays penetrate the body with radiation, and MRIs do so with magnetic fields, but there’s nothing else that functions quite like needles. They deliver medicine and extract secrets; they shape our appearance and reorganize the appearance of other organisms. A needle is a vessel traveling from the outer world to the inner one, then coming back out again. Transient but powerful, and so, so important. I know for a fact that their existence makes my life better.

(And not just because I have cool tattoos.)

I learned of Alice Wong’s passing almost immediately after I woke up this morning. I sat with it quietly for a long time before I could gather myself enough to really think about what she meant to me.

I know that Alice affected so many people’s lives, and I am lucky enough to say that she asked me to write the discussion questions for her Disability Intimacy anthology—an amazing opportunity to deeply think about a book that I highly recommend. She was also the largest donor we’ve ever had for the Unexpected Shape Writing Academy, and her generosity absolutely impacted the lives of so many writers living with limitations.

I had just finished watching a sad TV show about a woman dying of cancer called “Dying for Sex” and was already crying, but it’s one thing to cry about a fictionalized version of a person (though the show was based on a true story) and another to cry for someone real, who constantly offered herself to the world.

Posts, tributes, memories were pouring in all over my social media feeds, because I’m friends with and follow a number of disability activists. There was one from the Crips for eSims for Gaza project, written by Jane Shi and Leah Lakshmi Piepzna-Samarasinha. I highly recommend giving it a read. The Crips for eSims for Gaza project was how I connected with Alice, though it was only a few emails back and forth. As of today, that campaign has raised over $3 million to provide Palestinians with access to communication technology.

postcards from the end of the world

Alice Wong was Crips for eSims for Gaza, and Everything to Us

Alice Wong was Crips for eSims for Gaza, and Everything to Us…

Read more

6 months ago · 143 likes · 13 comments · Leah Piepzna-Samarasinha

Then there’s a really beautiful tribute by author Steven Thrasher, who was friends with Alice and interviewed her for his book, The Viral Underclass: The Human Toll When Inequality and Disease Collide. I loved reading about Steven and Alice’s work as journalists and activists around the Palestinian genocide. I love that he classified Alice’s massive undertaking, the Disability Visibility Project, as “one of the great American journalism initiatives of the last few decades.”

Not only did I learn from all the essays published there, and the interviews recorded between Alice and others, they made me feel like I could see a path forward when I got sick with a number of chronic illnesses and then became disabled by them.

Another wonderful obituary appears in The Sick Times, written by Miles W. Griffis. He writes about their connections through the Long Covid community, and the way that Alice funded the Color of Long COVID series for the publication. It was another issue Alice cared deeply about, working hard at spreading the message that everyone needs to mask so the most vulnerable, including people like her who couldn’t mask for medical reasons, would be safe.

Share

You can learn all about Alice’s incredible life from these posts about her. The way that spinal muscular dystrophy changed her body, but only seemed to make her a fiercer advocate against ableism, racism— all forms of discrimination. She collaborated with so many people, across the disability justice world, and in the media, and publishing, and beyond.

While I first encountered her work with the Disability Visibility Project, it was her 2022 memoir Year of the Tiger: An Activist’s Life that introduced me to her. She was funny and smart and spiky and angry and seemed to inhabit life with the gusto of a dozen people. And she struggled regularly with ableism, both in her daily life and in medical settings.

Reading her story a few years after being diagnosed with inflammatory arthritis gave me new hope for what my life could be. When you have multiple chronic illnesses, it sometimes feels like the future is an impossibility. I don’t know how I’m going to be feeling tomorrow, let alone ten years from now; how am I supposed to plan for anything? But Alice’s vision and determination made me feel that I could fight for a future, for myself and for everyone living with different disabilities and less access to resources.

Though I didn’t know her personally, Alice was a guide and mentor in so many ways. She showed me how to love your body even when it hurts, even when it’s set to self-destruct. She taught me that I can fight alongside others for liberation, even when I’m tired and have too many doctor appointments. She was part of my web of reading on disability justice, alongside Sunaura Taylor and Leah Lakshmi Piepzna-Samarasinha and Audre Lorde and Eli Clare and Riva Lehrer and so many others, who taught me to see into the vast landscape beyond my own experience.

More recently, I listened to her experience with trying to recover her voice in an episode of RadioLab called “Voice.” During a medical crisis, she had surgery that gave her a tracheostomy connected to a ventilator so she could breathe. But the technology robbed her of her voice, and in this episode of RadioLab, she describes trying to find new ways to speak again. It’s a really poignant episode, especially because I’ve spent the past year and a half trying to learn and adapt to my new voice.

In the summer of 2024, I was diagnosed with abductor spasmodic dysphonia, a rare neurological disorder that causes the vocal cords to spasm apart on specific sounds (in my case, it happens on voiceless sounds— when I’m trying to pronounce words with f, c/k, t, h, th, s and a few others). [“She sells seashells by the seashore” is basically my worst nightmare now, and not because it’s a tongue twister.] The only treatment is botox injections in the throat, which I tried but didn’t have much success with.

I’m still learning the limitations of my voice. It’s quieter, often too whispery to be heard in a crowd, and sometimes even in one-on-one settings. New people regularly ask if I have laryngitis. It’s frustrating, and there was definitely a grieving process, but I’m learning to love and accept how I speak, one step at a time.

I meant to write Alice an email as soon as I listened to the RadioLab episode, to tell me how much her voice, whatever it sounds like, has always meant to me. But then I got caught up in other work, and never sent it. And now I never can.

In her final post, shared by her friend Sandy Ho, Alice wrote:

“As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.”

Thank you, Alice, for all of it.

To support her legacy, her family has suggested you can make donations to her GoFundMe, or you can chip in on the Crips for eSims for Gaza project.

I’m thinking of “officer-involved” when describing a police officer shooting another person. The passive language around police violence has been such a problem that the AP issued guidelines calling for more clarity and active identification of the shooter—only for the passive language to continue being used by reporters.

I’m especially thinking of “failed” and all the forms it takes. SNAP recipients failed to receive their benefits in November. The Toronto Blue Jays failed to beat the LA Dodgers in the World Series. She failed that exam.

Or, as I’ve heard a handful of times from doctors, I’ve failed this or that medication.

The language of failure is ubiquitous in chronic illness. One of my fellow spondyloarthritis friends likes to say, “You didn’t fail the medicine, it failed you.” Which is a much nicer (and possibly truer) way of framing it. We certainly can’t control how our bodies will respond to various drugs, especially immunosuppressants to which we can develop antibodies. But we also hear that we’re failing to improve, failing to be cured, failing to follow the proper exercise and diet regimens, failing to comply with different treatments, failing to tolerate side effects.

Do you know how many things you can fail at when your health is on the line? Basically everything. If you’re sick in any way, physically or mentally, society really wants to believe the failure ultimately comes back to you. (Thanks, ableism.)

I got to thinking about this because I was at a conference over the weekend, and a journalist on one of the panels talked about how she edited a column on the many benefits of failure for kids. The author argues that we’re all going to fail at some point, and rather than protect kids from that ever befalling them, we should teach them how to respond to failure. It’s a nice article that gets deeper into the nuances of failing, but I was still left with a basic quandary: who decides what counts as failure?

Sometimes it’s pretty clear-cut: a math test is graded a certain way, and you either pass or you fail. Most sports follow specific rules and one person/team is going to win while the other will lose (fail). You failed to stop at a red light, and police pulled you over and gave you a ticket.

But then there’s the squishier category of failure, the things that relate to our career or identity or values and beliefs. And this is where the word starts becoming amorphous. A bit baggy. All tied up with judgments and social cues and our secret desires.

Let’s start with a novel that me and a friend co-wrote. We worked together on this thing for years, brainstorming the characters, honing the plot, building the world. It was a joyful, exhilarating collaboration. And because both of us dreamed of being novelists since childhood, we went on the hunt for a literary agent to represent us. This process took more than a year, and over a hundred query letters, if I’m remembering correctly. It was a slog. But we found someone who wanted to sign us as her clients. She offered suggestions for edits, and then she started sending the book around to editors at different publishing houses.

We waited. And waited. And waited some more. We accumulated dozens of rejections. And at some point, after two years of being on submission, our agent decided there were no stones left unturned. Our novel failed to sell, failed to be published, failed to be printed.

Share

I won’t lie, this was absolutely devastating. Especially when the agent also decided she didn’t like any of our other projects, so would no longer be representing either one of us. And around the same time, I also had a nonfiction proposal out for submission with different editors, and that project also failed to be picked up by anyone.

Herein lies the dilemma: had we failed, or were we simply rejected? And what’s the difference?

Working in writing comes with so many rejections. Thousands of them, if you’re freelancing for long enough and writing fiction on the side. And generally, you learn not to take it personally. Agents and editors receive so many more pitches than they could ever possibly bring to fruition. As a writer, I want whoever I collaborate with to be enthusiastic about the work. So if there’s a story I believe in, I’ll generally keep trying until I’ve either found a place for the work, or I’ve run out of stamina. And when I make that decision for myself to stop shopping a story around, that does sometimes feel like failure. Because my goal was to get the thing published, and I failed at that.

But because book publishing (and journalism!!) are subjective art forms, I don’t think failing to achieve a certain kind of mainstream publication means the work itself is a failure. I’m still really proud of the novel me and my friend wrote. We had so much fun doing it. I learned from the project. Even though all the rejections built up to this big, stinging wound, they don’t erase the work itself.

Similarly, I can do everything within my power to stay as healthy as possible and … still fail. People get sick and die every day. It’s one of the most normal aspects of the human condition imaginable. But because we live in a capitalistic society that sees value only in our economic output, illness and disability are framed as individual failures. At best, as systemic failures (which is the more realistic framing).

The thing about the word “fail” is that it tends to be sticky. It’s not just that my body failed to get better from chronic illness, or that my book failed to be published—it’s that I am a failure. Or so my brain (and occasionally other people’s brains) want to interpret it. It’s hard work pushing back against this narrative!! Because we also live in a very individualistic society, where every win or failure is laid at the feet of the individual. We don’t like doing the work of viewing our society in all its complexity, in seeing the barriers that might be in our way or the advantages that make certain goals easier to achieve.

I’m going to keep facing a lot of rejections as I continue writing, especially as I prepare for my book to come into the world. And I definitely have more goals I’d like to achieve, for my body, for my work, for my life. With some of them, I’m sure I’ll fail. But that doesn’t mean I won’t enjoy the journey, or that I will be a failure.

Now I’ll just repeat ad nauseam until that message sinks in.