Last week I posted a photo of myself on the bathroom floor with the caption “Portrait of a woman who flamed out while putting her sneakers on,” and could immediately tell from the responses which commenters have dealt with ADHD and/or chronic illness—either in themselves or a loved one—and who has not. Because some people instantly got it, and some people were worried about me, or urged me to Get better soon! 1 And I realized that people without direct experience, don’t understand a whole lot about chronic illness, and also that while I talk about my ADHD sometimes, I don’t really talk about my chronic illness a whole lot (partly because I’m just coming to terms with it myself), which means that even if you have direct experience with me, it might not be clear. So here goes.

I’ve always been like this. Unless you knew me before grade school, you have never known me as a non-chronically ill person. In addition to ADHD, which I have always had, and a connective tissue disorder (hEDS), which I assume I’ve also always had, I have Mast Cell Activation Syndrome (MCAS), Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), and an unspecified autoimmune disorder (which could just be the MCAS talking, but not in a way that’s conclusive even after the billions of blood tests I’ve had). This seems like a million things to be wrong with a person, but it’s all interconnected, like a constellation of chronic illness.

When I was super young (six or seven), I remember having a cold and breaking out in hives and the doctor told my mother that sometimes when kids get viruses, they’re allergic to the virus and it causes hives. No one seemed all that concerned and the hives went away as the virus waned. Not long after that, I developed asthma and allergies, but no one put any pieces together around that. For the next forty years, I would periodically have completely bizarre and unexpected reactions to foods, fragrances, pollen, plants, clothes, temperature changes, and my own sweat, then go for more allergy testing and only test positive for an IgE allergy to dust mites, but none of the other things I was certain caused hives, or wheezing, or made my tongue swell up. I was always tired. I blacked out for a moment almost every time I went from sitting to standing, or after climbing to the top of a flight of stairs. My feet throbbed if I had to sit at a desk (grade school was hell for so many reasons). I felt dizzy if I had to stand still. My stomach always hurt after eating. And even when I was in the best shape of my life, I could never run at anyone else’s pace (faster or slower than mine) without feeling horrifically nauseous, breathless, and disoriented.

Because I was so young when all of this started, I thought these things were simply the basic experience of having a human body, and that everyone else was just less whiny than me. And in all honesty, I always thought foodies were exaggerating. How could anyone actually enjoy food when they knew that post-meal stomach pain was on the way?

The first true crack in my awareness wasn’t until six or seven years ago. I was complaining to a friend about having to make a dentist appointment, but I was waiting for copyedits that would come with a tight deadline, and didn’t have a clear idea of my schedule for the next few weeks. She didn’t understand why I needed a big picture understanding of my life circumstances to make an appointment that would, at most, take 3 hours, including travel. I explained that I’d probably feel awful for days after, struggling with jaw pain, headache, nausea and exhaustion.

“So wait,” I said, “you just, like, go to the dentist and then go on with your day?”

She did. The commitment of a dentist appointment for her was simply the time it took to go to the dentist.

I started wondering how many things that I found exhausting weren’t exhausting to other people. Not having an understanding of my disabilities beyond having ADHD, I chalked it up to my neurotype instead of my body and decided this was an ADHD thing—like the stereotypical “joke,” that a 3PM appointment ruins a whole day for someone with ADHD, even though I also had physical symptoms. I felt bad for being so easily rumpled by life. All I’ve ever wanted was to be rugged, but if a simple dentist appointment was a major commitment for me, and wasn’t for other people, it meant I was clearly the opposite of rugged.

As a kid, I was always getting hurt—turning my ankle, spraining my wrists, bruising my tailbone, displacing my ribs, getting air trapped between my lungs. In high school, I had to have major orthopedic surgery after the muscle in my thigh contracted while I was lying on the couch, ripping the cartilage in my knee. I spent nine months on crutches. I threw my back out as frequently as a middle-aged man who forgets to lift with his legs. Again, I somehow attributed all of this to being worse at human-ing than everyone else. Turns out I had a connective tissue disorder.

In 2024, when I was finally diagnosed with MCAS (because certain diagnostic tools useful to my diagnosis had finally become available2) I was prescribed a mast cell stabilizer and all of a sudden the weirdest thing happened when I ate food.

“My stomach feels like nothing,” I said to my husband.

“What do you mean?” he said.

”You know how your stomach hurts after you eat?”

No. No. He didn’t know.

I asked a friend if her stomach always felt like nothing after she eats. It did.

“I’m so glad you have nothing stomach now too,” she said.

I was forty-seven years old when I learned that your stomach isn’t supposed to feel like it has been folded in half too many times and stomped into submission after every meal, that black tea doesn’t give everyone the sensation that their internal organs are being turned inside out and flipped upside down, and that if bananas make your blood pressure plummet, it’s not just that you don’t like them because they make you feel funny, it’s that you’re having an anaphylactic reaction, even if you don’t test as being allergic to bananas on a skin prick or blood test.

Turns out when too many things trigger my MCAS, everything starts to trigger my MCAS. At one point, I ran out of the house, unable to breathe, head spinning, vision going black, because of the smell of food Jeremy was cooking. I had an anaphylactic reaction to food someone else was planning to eat3.

Turns out, stress is an MCAS trigger too.

Turns out, I also have POTS. My blood volume is low and my heart and mind are kind of out of sync when it comes to moving that blood around my abnormally stretchy body. So simply going from seated to standing can cause my heart rate to jump 30-40 bpms. Eating sends a lot of blood to my stomach, away from my brain, and standing still, or sitting in a chair with my feet flat on the floor means my blood starts pooling in all the wrong places. I’d rather walk seven miles than stand in line at the grocery store, which makes absolutely no sense if you don’t have an understanding of POTS.

So, now I take a beta blocker when my POTS is flaring, eat an abnormal amount of salt, and drink water like it’s my primary purpose in life. My POTS gets worse when my MCAS is flaring, so managing MCAS is also part of managing POTS. The way my Dystautonomia doctor described it sounded like a horoscope. Some people’s POTS symptoms are worse than their MCAS symptoms, but I’m basically an MCAS with a POTS rising.

And all of this causes a lot of pain. But because I’d never not known some version of that pain, I was very good at disconnecting from my body. Much of the time, I didn’t carry awareness of pain, only the exhaustion that was the result of being a person who walked around in pain all the time. When I was first diagnosed, I became suddenly aware of just how much my body hurt and it felt like the onset of the flu, a creeping ache taking over on a cellular level. I wanted to cry, but worried if I started I’d be crying out forty years of hurt. Thankfully, treating my MCAS helps treat the inflammation that causes the pain, because it turns out that painkillers are a huge MCAS trigger for me too.

So, actually, I’m a pretty rugged MFer, because I’ve been dragging myself through everyday life in the forty-some-odd years since that virus that made me break out in hives, without even realizing that other people just eat food and breathe air and walk around in the big smelly world and go to the dentist like it’s nothing because they’re not flirting with ruin all the damn time. Once on Threads I saw a post that said something to the effect of how when you’re a chronically ill person, you’re also the caretaker of a chronically ill person. Which means that in addition to having a fluctuating health condition, I also have the extra burden of being the caretaker of this weird and often wonky body, and I’ve managed to keep myself going this far, which is no small feat.

Everything I’ve accomplished in my life has been while managing my constellation of conditions. And while I think over the years, that constellation has added a few stars and possibly gotten a little brighter, I’m better at managing my chronic illness issues now that I have diagnoses, medications, and an understanding of the need to pay attention to my body instead of constantly pushing myself past my limits. A really wise friend with chronic illness said to me once that they don’t actually mind talking about their illness, but they worry that other people will decide for them what they can and cannot do. They want to be the only judge of their abilities, so they tend to keep it on the down low. And I understand that, because I’m terrified of someone else placing limits on me. I have limits, but so does everyone. I also have a whole bunch of tricks to accommodate myself. With my life-long chronic illnesses, I have written five books, converted yards to gardens using only hand tools at two different houses, single-handedly sold and packed up a house in Rochester to move cross-country to California4, raised and trained four dogs, and even ran up a mountain once on a whim.5 Everything I do has a cost that chronically healthy people don’t have to calculate, but it’s my math, not yours. And I also have the benefit of never expecting to be comfortable. Something I’ve come to appreciate about myself (while also realizing I have to be more mindful about) is that I have a spectacular tolerance for discomfort. I don’t ever expect to feel good. Do you know what an incredible power that is (when wielded responsibly)? Not only does it make me really tough, it also means I’m really good at appreciating small, simple things.6

I’m not going to get better soon, or ever (barring some kind of miraculous scientific breakthrough). My conditions are chronic, not curable. Some of them are basically woven into the fiber of my being. The best I can hope for is management. I’m alright with that, because I’ve never known otherwise. Management is a bonus. I’m happy to have names for the specific things that are wrong with me (as opposed to everything) and an understanding of what foods I can eat and products I can use without breaking out in a rash so severe that urgent care will think I have measles and make me go through a special door to the exam room so as to avoid an outbreak (turns out I can’t eat strawberries, and have to use newborn detergent to wash my clothes). And while there’s still some lack of predictability built into my experience of having a body, the fluctuating nature of my conditions means that I have really good days mixed in with the bad, and easier seasons, not just difficult ones. I cling to good and easier with all I have, and I’m grateful, but I know from the outside that my inconsistency is confusing. She hauled a gazillion yards of mulch around her yard and dug up the lawn with a broad fork, what do you mean she’s chronically ill? Well, Sheryl, that was on a good day.

My whole life has been a process of recovering from things. Prior to diagnosis, I would beat myself up relentlessly, because my fluctuating health and energy felt fake to me too—like something I must be doing on purpose. Laziness. Lack of motivation. Forget the fact that I’ve written five books, and done a bunch of other projects that required a truly impressive level of self-motivation and discipline. A down day (or series of days) after a week of extreme productivity would leave me muttering “Get the fuck up and do something, you piece of shit,” to myself, while I felt glued to the couch, barely able to muster the energy to find a tv show to watch. When something big was on my schedule, I’d watch the date creep closer, nervous about how I’d feel, believing the state of my body was as random as the numbered ping pong balls pulled from a bingo cage. I’d pack my schedule and then crash hard the second I had a free moment. I’d knock myself out spending energy on other people, not understanding that my energy debt was far greater than that of most of the people I was pouring effort into helping. When we talk about energy, we’re all operating with different rates of currency, and I think we have to start having more serious conversations about the cost of effort, how it varies, and how to weigh that when bartering with each other for time and attention. Because the way we talk about effort in our current culture is incredibly small-minded. If they wanted to, they would, is ableist bullshit. If wanting was all it took, my life would look very very different.

One of my primary goals is to not get worse. My collectors pack of chronic illnesses were most likely was all kicked into gear by that hive-inducing virus. Over the years, it’s likely that other viruses shifted my issues into higher gears. Post-viruses, sometimes, I got better, sometimes I accumulated symptoms that stuck around, or only faded a little bit. The October before Covid hit, I had a respiratory infection7 that sent my body into a tailspin, took ages to recover from, and triggered a loss of tolerance for a wider range of foods. As much as it sucked, that virus made me very aware of how careful I needed to be about Covid, even prior to gaining a fuller understanding of post-viral illness and prior to my diagnoses. I know sickness = symptom amplification for me, so I’m going to do everything I can do avoid sickness.

But you have to live your life…

Avoiding things that will make me worse is living my life. I eat a very limited, careful diet—which is not disordered eating, it’s necessity. I mask in public indoor spaces and avoid crowds. Since it’s likely that a virus kicked off my issues, and many of the issues I’m dealing with are also components of what people with Long Covid struggle with (the post-viral illness in me honors the post-viral illness in you), it is my personal mission to never get another virus again if I can help it. I’m in Reddit and Facebook groups with people who were completely fine for their whole lives—with nothing stomachs and normal heart rates—until they got Covid, and now they have MCAS so severely that they can only eat two or three foods under very specific conditions and/or have POTS so badly that walking the length of their apartment is the heart-rate equivalent of doing a 100-yard dash while carrying an anvil.8

While I have a lot of ups and downs (often many cycles during any given day), I still have about twenty safe foods and a little bit of leeway to eat some other foods in moderation. On a terrible, horrible, no-good, very bad day, I can still usually walk the dogs for a mile or two, which is a huge level of health privilege that I greatly appreciate. On a good day, I can easily hike 5-7 miles on hills, or do my extreme landscaping projects. I’m even hopeful about getting back to running at some point. I appreciate the quality of life I have with every ounce of my tachychardic heart. I know I’m extremely fortunate for the health I do have, and I’m not keen to mess it up by raw dogging some rando’s germy breath, eating a banana, or using scented hand lotion. Because even when I crash out while putting on my sneakers, as long as I am able to keep the health I have, I know eventually, I’ll get that other shoe on. I’ve always had days like this. I’ve never known life without days like that. And I’ve always done it anyway. I’m not whiny. I’m actually really fucking rugged.

I was so excited about the new Lindy West book, Adult Braces, that I had the audiobook pre-ordered so I could start listening on the day it was released. I loved listening to Shrill, and The Witches Are Coming, and laughed so hard while listening to one of the essays in Shit, Actually, (the one about marriage — don’t look up which movie it’s about, the reveal is part of the joy) that I had to pull over while driving and thought I might wet my pants.

When I started writing this, I had not yet listened to the episode of the ICYMI podcast about Adult Braces.

Three things became very clear to me after listening:

1. My stance as a GenX woman who is five years older than Lindy is not the same as that of her millennial fans, who looked to Lindy as a role model. I enjoy Lindy’s perspective and have learned a lot from her thoughtfulness, but my experience of her is mostly through her books, not her online presence. And I wasn’t ever looking to her as a role model, but I understand after listening to ICYMI that a lot of people were.

2. While I grew up with body image issues, my experience of life has not yet included living in a fat body, so again, I was not looking to Lindy to hold all the answers for me about body positivity. I simply appreciated the wisdom she shared as it related to my life experience, and as it helped me recalibrate my internalized fat phobia and the general diet of bullshit about weight and self-worth I’ve been fed since infancy.

3. There has been some hideous behavior from some of the “characters” in this memoir in relation to people who have written about the book, and I, of course, am not defending this behavior in any way, shape, or form. It’s real bad.

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All this is to say that my perspective (like everyone’s perspective) is limited to the confines of my life experience and the media I’ve consumed and the extent to which I can and cannot empathize because I either have or don’t have the right footholds for imagining other people’s experiences appropriately. And also to stay that I am not in any way defending less-than-stellar online behavior or those horrible emails1 that were sent to Scaachi Koul about the piece she wrote on Lindy and Adult Braces.

So, on the one hand, I understand why people are upset with Lindy, et al. But I also think this hullabaloo is in part because the expectations on her are way too high. I suspect that when you live a life in which the public expectations on you have always been way too high and you tried very hard to put forth a level of vulnerability and honesty that is possibly outside your comfort zone, it’s probably going to make you feel kind of brittle and defensive when it feels like everyone approaches your work as if you’re supposed to have all the answers to life and gets angry when you don’t. No one likes to not only not be appreciated for the ways they’ve been generous but to be poked at and complained about for everything they haven’t done to your liking. Part of the problem of being a creative person in the world is that when we put our whole heart out there, it’s at the expense of having a thick skin. It’s not actually possible to have a thick skin and feel everything at the same time. Lindy is a compelling writer because she’s able to dig into what the world feels like to her on a fine-tuned level. She’s willing to admit to the sensitivities of her being because she hasn’t numbed them. And now the world is like, “Hey, sensitive being! Take this! Take that! What’s wrong with you that you can’t take it? GROW THICKER SKIN.” And you know who really doesn’t know how to be thick-skinned appropriately in public? Someone who has spent their whole life obsessing about how vulnerable it feels to be human in the world so they can write about it.

I read a complaint by another author who said she wanted the story to end at a more recent place—that Lindy hadn’t given this author and her daughters the happy ending they deserved by stopping the story in 2021—that we could feel better about the ending if we had a glimpse into the future and knew she was still happy. This confused me, because as an author, this person should understand that books have deadlines. They have to end at some point. A book cannot be everything across all time periods. Lindy was writing about a trip she took, and she had a deadline and set parameters. She wasn’t writing about what happened after the trip. A book about the trip and after the trip is a different book than the one Lindy wanted to write. She wasn’t writing a Choose Your Own Adventure book. In the past decade or so, I’ve noticed a growing tendency for readers and the publishing industry to talk about books in terms of what they aren’t or what they should have been, and whenever I see that happen, I go a bit bonkers. Lindy wrote the book she (presumably) wanted to write, and all you have to decide is whether it’s for you or not for you. Did you like it? Did you not? If you want to get into a deeper level of intellectual criticism, do you think she accomplished what she set out to do? What parts made sense to you? What parts didn’t? How does this book differ from other books that you liked more? There are many avenues of literary criticism that make sense as an intellectual exercise. But saying, “I wish this had been a completely different book that covered a completely different span of time,” is like complaining that the apple you purchased doesn’t have a peelable rind.

A book—memoir or fiction—is a snapshot of a person’s perspective during a set time period. We can’t expect them to include perspective they have not yet gained. And we have to understand that people’s perspective changes over time. When I first wrote The People We Keep, I was 10ish years older than April. When I published it, I was 25ish years older. By the time I finished writing the book, my understanding of the sadness of the story I wrote was totally different. If I wrote my last draft at 45 years older, it would be something else entirely.

A memoir is, by design, the perspective of the person writing it. And we are not ever completely reliable narrators of our own lives. A big criticism of Adult Braces is that people don’t believe Lindy is actually okay with the polyamorous life she has ended up in, because it wasn’t sprung on her in an ethical way, and some of the things she says about her feelings don’t leave readers convinced she’s actually okay with her circumstances. But…but…that’s the book. The book is from a time in her life when she was trying to explore/make peace with/make decisions about whether she wanted to stay in her marriage now that it was no longer a union between two people. She brings us along as she drives to Florida and spends time conceptualizing what this new union would look like if she did stay. She’s allowed to lie to herself. She’s allowed to talk herself into things. She’s also allowed to actually be okay about it. Part of the magic of reading a memoir is deciding how reliable one’s narrator is.

In Bob Dylan’s memoir, Chronicles: Volume One (there is no Chronicles: Volume Two, btw), he spends a lot of time describing the ways he’d lie to reporters for sport, because he didn’t feel like telling the truth. So when he tells us, as readers, a whole bunch of stories about his life, part of the fun is understanding that it’s entirely likely he’ll lie to us, too. A memoir isn’t the absolute truth of someone’s life. A memoir is what someone wants to tell us about their life. It’s up to us to decide how much we believe— same with a narrator in a novel. (And of course I cannot help but think that there’s a lot that can and should be said about how we delight in Bob Dylan’s spun yarns, but demand some kind of absolute truth from the women who write memoirs—but that’s another essay).

At the beginning of The People We Keep, April does the math on how many people are in the audience at an open mic night. At first she says there are “Maybe fifty” people in attendance. But later, she describes, “little cafe tables, four chairs around each one. There’s like eight tables out there and every chair is filled.” And yet, there’s also an empty chair for her at one of the tables up front. I used this discrepancy as my map key for how unreliable a narrator April is. 50 - (8 x 4 -1) = April. Not because she’s a liar, but because her perception is skewed by her age and fear and confidence and vulnerability (as is everyone’s perception). Freya in Home of the American Circus is much more reliable as a narrator, but because she doubts herself so frequently, her perception is skewed by her lack of confidence in her own perception. As an author of fiction, we have to constantly confront the level of reliability our characters have access to.

When people write memoir, yes, they are writing about real things that happened (presumably), but we aren’t looking through their eyes directly. We don’t walk around with their hearts and minds transplanted into our bodies. We don’t live the moment-to-moment of the stories they tell us, which means that they become the main character in their book. There are omissions in their retellings. For time. For story. For word count. To protect loved ones. To protect themselves. Lindy didn’t tell us everything she experienced. And if she was, at any point, lying to herself, the character of Lindy was also lying to herself. That’s not a failure of form. It’s the miracle and magic of character.

Ultimately, the experience of reading is about what WE bring to the material we read. I love Bob Dylan all the more for the room he left me in his memoir to discern the truth from the lie, to notice where I was unsure. He took me on the journey of the character of Bob Dylan, and I was part of it. He wrote me in. So did Lindy. She wrote us in. If you’re worried about her, if you doubt her, if you want to know what’s next, Lindy did that. She made reading her book an interactive experience. She didn’t hand you a verified map of her journey. She gave you clues to the map key, and you get to decide how much you believe her. She’s a character in a story about a woman named Lindy going through life stuff and taking a road trip. She didn’t write an instruction manual. She didn’t write a manifesto. She wrote a story. About herself. She also told us in a million different ways that she doesn’t see herself clearly. This woman, who is so lovable that I cried over the sweetness of her observations of people and landscape, tells us over and over again how she doesn’t feel worthy of love. Look reader! It’s right there! A map key!

I think the best magic of being a human who consumes the art of other humans is the part where we suspend some disbelief and go along for the ride with someone. Because certainty is an unknowable entity. Anyone who is certain of anything that is fundamentally ephemeral is lying anyway.

But I guess I understand the disappointment, too. Adult Braces isn’t a book about a person who has found the answers and gets the kind of happy ending that’s easy for every reader to digest. And I think most of us spend at least a little time hoping somebody out there has all the answers. Or at least some of the answers. I think maybe part of the sadness of adulthood is realizing that most people are floundering just as much as we are. Perhaps they have a little corner of their life all figured out, but to feel any sense of “And they lived happily ever after. The End.” about any part of life is to deny the impermanence we’re always facing. When we’re looking for an answer from someone else, we’re looking to rest our weary minds. We want the happy ending. We don’t want, “And they lived happily ever after with that perfectly tidy corner, until an earthquake happened and knocked all the books off the shelves.” It’s really, deeply sad that someone doesn’t have all the answers. When I let myself, I get angry about it sometimes too. One of the things that sucks about being a novelist is that there’s a point where you realize ALL THE OTHER NOVELISTS FROM ALL THE OTHER TIMES IN LITERATURE WERE ALSO JUST HUMAN BEINGS. Do you know how much that sucks? It really sucks. I think there’s a certain kind of person who wants to be the best and brightest and wisest and most godlike, so maybe the idea that every author in all of time was just a person isn’t disappointing, because it gives them room to be a god. But personally, I really wish that Jane Austen and Willa Cather and John Steinbeck had been some kind of Extra-Human so we could look to them for definitive answers on what it means to be human and we wouldn’t have to filter any of it through our own lens. We could hold on to the idea that maybe there’s a lost tome by an Extra-Human out there that will give us a manual for how to live life as brilliantly as possible and explain what the meaning of everything is beyond 42. (I know for some people that book is the Bible, but it isn’t for everyone, and also…still written by people). So all we can really expect from books—memoir or fiction—is that the author worked really hard to share their perspective on the world at the time of writing through their own story or fictional characters—in a way that feels honest to their own hearts (or dishonest in a way that’s entertaining).

I think the other part of the problem is that publishing is slow and expects authors to do the work of keeping themselves relevant on social media. Lindy couldn’t write this book, end it where she did, and leave us waiting for the next one to see how things work out, or don’t. We are always seeing the pre-lap, so memoirs become flashbacks that get considered in the context of their reception, of their author’s behavior, of the continuation of the author’s life. Which means the author has to live with the ending they’ve given us—in public—as if they themselves froze in time when the story in their book ended. And the people who were written about are out wandering through the world with all sorts of feelings.

What I’m saying is, we’re expecting our memoirists to be gurus. To give us a narrative that matters to our lives, that teaches us how to show up in the world. We’re expecting them to be prescriptive to us, so when they give us an Rx we don’t like, we get angry. And I want us to stop it. Because I have put a lot of emotional labor into giving up on thinking anyone has the answers for any kind of long-term happiness or peace of mind. I have accepted the inescapable variables of life. I don’t need someone who hasn’t lived my life giving me some kind of road map for life in general. I simply want to know what life is like for other people. I want to be a voyeur. I want gritty details of how it feels for you to do something brave, or walk barefoot on hot sand, or fall in love, or stay in love, or be confused about how you lost yourself in the process of trying to love someone. I want to know about how you get stomach aches when you’re nervous, and I want you to tell me all the things you cry about that might not make sense to anyone else. I want to piggyback on your human experience so I get to live a little more life than the one that’s mine. And maybe I’ll feel less alone. Maybe I’ll understand exactly what you’re saying—exactly how you feel. Or maybe I’ll realize that some people are operating with brains and hearts that have a completely different programming system than mine do. And either way, I learn things about myself that are not the author’s lesson to teach. They’re the lessons I prescribe myself.

So please stop demanding perfect resolution and authoritative, reliable narrators in memoir. Make it easier for people to share what feels true to them right now, in the moment that they’re writing. If they change their mind, they can give us a new installment. But I suspect that next installment will be a whole lot easier to write if they haven’t had to come to a conclusion of absolute enlightenment. And I really want to read Lindy’s next book. I don’t need her to hold all the answers to all the mysteries of life. But I really like hearing about what Lindy thinks it means to be Lindy at the various stages of her life. And I love hearing about the things that bring her joy. I really hope she finds a lot more of it.

Links to Bookshop are from the affiliate account we use for Now That We Think About It, and I get royalties on the books I wrote.

The other night I had a dream about my mother. My dream-self needed to run a bunch of errands. It wasn’t now. It wasn’t in the past. I think it was in the far future, but I was my old self. I was in the grocery store. I was in a shopping mall. I was in a hardware store. Everywhere I went, the floors were covered in sand. Deep sand. The bottom shelves of all the store displays were submerged. It was hard to walk, but I wasn’t surprised by the sand. And I wasn’t surprised to see my mother, in every store, sitting on the ground, digging. She pulled a mouse from the sand and ate its tail. “Don’t do that,” I told her. She pulled another mouse from the sand and swallowed it whole. “Stop doing that,” I shouted. She ignored me. Everywhere I went, there was sand, my mother, and mice. I woke up nauseous. The next day, eating my lunch, I remembered my dream and couldn’t finish my rice noodles. They made me think of tails.

My mother died almost a year ago.1 There was no obituary. But about a month back I found mention of her death in a news article about something else. So now I know it’s true. And that knowing allowed me to fully realize how fucked up it is that I couldn’t be sure my mother was actually dead until I saw it in print. Not that I didn’t hear the news from a reliable source, but because my distrust of my mother is so great, I couldn’t be certain that my reliable source had received reliable information. Given our past, it wouldn’t be unreasonable to believe that my mother faked death to fuck with me. But she didn’t.

I’m not sure if proof of her death triggered the dream, or if it’s because I’m nearing the anniversary of the day I first found out.2 But I also noticed that Netflix just added Death Becomes Her to streaming. I watch Brooklyn 99 to fall asleep at night, and for the past week or so the image of Meryl Streep with her head on backwards, and Bruce Willis holding a candelabra through the hole in Goldie Hawn’s stomach has flashed on the screen in the slideshow of new releases before I can choose my next episode. I have very vivid memories of going to see that movie in the movie theater with my mother. We didn’t like it. Or at least she didn’t like it so much that I was not allowed to have my own opinion. Death Becomes Her came out in 1992, so I was fifteen. We didn’t go to the movies often, but when she was mad at my father, sometimes she liked to not go home and take me with her and not tell him where we were.

When I was in nursery school, one time my father and his parents picked me up at the end of the day.3 Everyone was very quiet. I remember being in the car. The hushed voices. The absolute panic I felt. Because the last time I’d been in a car with my grandparents and father and everyone was acting strange, I believed we were going to the hospital to pick up my mother and new baby brother, but instead, my mother got in the car by herself, and my brother never came home.4 So on the day they picked me up from nursery school, I was four, and panicked and listening carefully. From all the jumbled things I pieced together, my mother’s yellow Volvo station wagon had been found on an overpass near the icy reservoir. She was not with the car. Later, she did come home. A friend had driven by and picked her up—that was the claim. Her car had broken down — that was the claim. But when they went to get the car, it started up on the first try. Ice in the gas tank became the claim. The theory from the mechanic was that the ice melted as the sun hit the car later in the day. My father always put antifreeze in her gas tank after that, mine too when I was old enough to drive. And I can’t help but think that every time she took me out to see a movie, or for a spur of the moment dinner at Friendly’s, or on a ridiculous shopping spree at the outlet mall an hour away, and we came home well after dark in those days so far before we had cell phones, it was a probably a deep kind of punishment. But I also have little sympathy for the father who didn’t rescue me from her.

I have little sympathy for my mother now, too, even while I understand the workings of her broken heart—probably better than my own. I had to fight hard to get here - to get angry. To believe that I am more important to myself than she is to me. Because I was taught to take care of her. I was taught to understand her. And when I didn’t understand, I tried even harder, combing through her anger to find the logic, reading her moods like a weather map. I tried so hard that she had all my sympathy and I had none for myself. Even after I left and told her I couldn’t be both her daughter and a person who survives, I still worried about her more than I worried about me. I’d picture her clearly, relentlessly – a looping video that kept her stuck in time and space, alone at the dining table, still in her nightgown, losing hours/days/weeks/months to the chatter of soap operas and talk shows playing on the tiny kitchen television – as if she were willing her brain and body to atrophy. I felt so sad for this woman who lost both her children, that I forgot to feel sad for myself for growing up in absolute terror, and needing to leave my family of origin to limit the damage of her destruction.

Your mom’s so nice, I used to hear all the time. From friends. Teachers. That tutor my mother hired to help me prep for the PSATs so my score wouldn’t embarrass her. “Your mom’s so nice. She’ll understand,” the tutor assured me, after I got off the bus to her house, shaking and crying, mascara-laden tears soaking the collar of my shirt, because I’d failed math and hid the mid-term warning letter and now my teacher was forcing me to get my report card signed. And when the tutor helped me confess, my mother smiled and laughed like it was nothing and kids will be kids, and isn’t it funny to fail math, who even cares. “See, she’s so nice,” the tutor said, while my mother glared at me—switching to a smile when the tutor turned back to look at her. In the car, as soon as we’d pulled down the driveway away from the tutor’s house, my mother screamed so loud it made my eardrums itch. I could feel her anger in my chest like the pressure of a thunderstorm.

The entire left side of my body always hurts. My jaw, my shoulder, my back. They are always tense, full of knots. My teeth are worn down unevenly on the left side of my mouth. A trauma therapist asked me once if I got yelled at a lot while sitting in the passenger seat of a vehicle. I am still flinching. Still protecting myself from her wrath. I have exactly the kind of autoimmune dysfunction that likes to travel with my high ACE score. My default state as a child was fight/flight/freeze/fawn. Even when I was away from home, I knew she had to pick me up sometime. In our house, she slammed doors with so much force that the wood cracked. One time she slammed the dishwasher door shut hard enough to break every glass in the top rack. My muscles remember all of this. They don’t know how to forget.

Your mom’s so nice. But one time we were driving through the shopping center downtown, and she asked me to get out of the passenger seat to drop a letter in the mailbox near the post office, and when I crossed in front of her car, she looked me dead in the eyes and put her foot on the gas. I was still recovering from knee surgery, but I had to jump on the hood of her car to keep from getting hit. Through the windshields I could see the shock of the people in the station wagon behind us. So I knew it was real. I knew it had happened. Someone else saw the way she hated me in action. When I got in the car, she was laughing, light-hearted. “I thought it was the brake,” she said, in her silly-me voice, throwing her hands in the air—a big gesture of Oops! for the people behind her to see. But I knew her foot was already on the brake when I got out of the car.

Whenever I think of that moment, which is usually while I’m standing on a sidewalk, waving off a driver who stopped their car to let me cross the street,5 I wish I could travel through time and tell that kid not to get back in my mother’s car. Go into the post office and ask for help, kiddo. Get the people in the station wagon to give a statement to the police. But I’m sure I got back in that car that day, because my teenage-self already knew what would happen. Your mom’s so nice. Of course it was a mistake. The teenage version of me had good reason to believe it wasn’t even worth mentioning to anyone. But at least after that day, I knew in my bones that the unease I felt around my mother—my understanding of the danger of her moods—was accurate perception. I learned to let my guard down less. That moment created a fissure in our relationship that kept cracking over the years, until it grew big enough to allow me to escape. And after I left, for years and years, until I finally got a new wallet, I carried a folded up Post-it note that read: Your mother tried to run you over with her car, to remind me not to call her, because everyone has moments when they just want their mommy, or, at least, a mommy, and I needed that paper to remember why I couldn’t have mine.

Grief and trauma do strange things to a brain. Mostly, these days, after many years of thought and work and study and therapy, I can walk around during the day not thinking about the things I don’t want to think about—filling my mind with trivial worries or doom scrolling, playing guitar, watering the garden, walking the dogs, doing research to write about imaginary people. Sometimes, I can even handle silence. But at night, my mother is pulling mice from sand that covers the floor of a department store, eating them tail first, or whole. The thing I find hopeful is that in my dream, I’m not afraid to tell her to stop. She doesn’t. But I’m not afraid to tell her, again and again.

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You know that classic bit of writing advice about how you’re supposed to write the book that scares you? For a long time the thought of actually writing and sharing Home of the American Circus scared the heck out of me. I spent many many years collecting ideas for this book, terrified by the thought of how deep I’d have to dig to tell this story the right way. The book is firmly fiction, and the characters are all my imaginary friends, but the setting and themes are literally and figuratively close to home for me. Freya’s story isn’t mine, we have different life events and demographics, but I understand her sense of grief and loss and floundering and hope on a cellular level. And of all the characters I’ve ever written, the way her mind works is the closest to how I think and feel. It takes place in the town where I grew up. And I think when you read this book, you won’t know my life story, but you will know the tenor of my heart. I grew up as a kid with undiagnosed ADHD in a place where I didn’t fit, frantically trying to look normal, believing it was the only way anyone would love me. Always falling short. Terrified of failure. And then in my early twenties, I dropped out of college and worked at a biker bar and made such a huge mess of my life that I was forced to build myself up again brick by brick—this time knowing that failure isn’t the worst thing that can happen to a person. That as long as you can find the strength to try again in one way or another, falling flat on your face is not the end of the world. I learned that the only way to truly feel loved is to be yourself and see who’s up for loving you in your natural form. The people I keep taught me that. And even though it scared me, this was a book I needed to write, it’s the work I’m most proud of, with characters I love the most. So sharing it doesn’t feel like the end of the world at all. Just the end of the world where I have not shared this novel set in my hometown with a character who has a heart like mine.

#misheardlyrics #rem #homeoftheamericancircus #awkwardguitar #itstheendoftheworldasweknowitandifeelfine #lennyjuice

My name’s Eric and for just a second, imagine this:

- Someone does a search and ends up at Allielarkinwrites.
- They hang out for a moment to check it out. I’m interested… but… maybe…
- And then they click the back button and check out the other search results instead.
- Bottom line – you got an eyeball, but nothing else.
- They’re gone.

This isn’t really your fault – it happens a lot – studies show 7 out of 10 visitors to any site leave without leaving a trace.

But you can fix that.

At first, and for a long time, what I really wanted was to fix the problem of Eric emailing me three times a day — which isn’t so simple as blocking his email address, because for some reason Eric, or his bot, takes the time to fill out the contact form on my website every single time he wants to deliver this message to me.

And for a while, I actively tried to figure out ways to make it stop. But several months in I started to find it funny. Then I started to find a strange solace in the process of getting a notification about an email, thinking it could be something important/life changing/harrowing, only to realize it was just Eric Jones in my in-box again.

In this world where I feel responsible for so many things I cannot control, Eric’s words have become a pillar of comfort. A vote of encouragement. And by filling out the contact form on my website, Eric Jones has added himself to my newsletter mailing list, so now he gets emails from me about my new book, which I believe makes us pen pals. I like to think he’s proud of me. But I was basically raised to have Stockholm Syndrome, so maybe I’m just projecting feelings on to Eric Jones. Maybe, despite his constant contact, he doesn’t love me like the sister he never had but always wanted. Maybe this affection for my spammer isn’t healthy.

It’s not my fault, friends.

It’s not.

I can fix that.

Eric can help me.

Hello, Friends!

Whooeee, I am one week out from sharing the entire contents of my heart with the world! And I have so much news to pass along!

Home of the American Circus is on shelves next Tuesday, May 6th! As much as revisiting my hometown in my mind was a complicated endeavor, it also left me with a sense of appreciation for the land where I grew up, and all the ways nature took care of me. Writing about Somers (pronounced Soh-mers) made miss my rowboat, and when you read Home of the American Circus, I know you'll understand how much love I have for the memory of that leaky old pond-faring vessel and all the freedoms it allowed me.

Book of the Month and TODAY

Last week, Book of the Month announced Home of the American Circus as one of their May picks (on national television, no less!). Home of the American Circus was part of the Today Show Spring Favorites Curated Box(which sold out almost immediately!). The BOTM May picks should be up any day now, and you can sign up here.1

Goodreads Giveaway

You also have a chance to win a copy of Home of the American Circus! Right now, Gallery Books is running a Goodreads Giveaway for hardcover copies of the book! You can enter here. I hope you will and I'd love it if you'd share the giveaway with your friends too!

Pre-order Giveaway

Pre-orders are so helpful to authors! Showing early enthusiasm for a book and contributing to first week sales is one of the best ways to support us. I appreciate your support so much and wanted to offer a special thank you to all of you who give Home of the American Circus an early boost!

If you'd like to pre-order a signed copy of Home of the American Circus, I'm working with Inkspell Books and Towne Center Books to do a fun giveaway. My dear old friend Chris Partellow created a beautiful design for me and (while supplies last) if you pre-order Home of the American Circusfrom either store, you will also get a custom Field Notes Notebook with your order.

Pre-order from Inkspell Books

Pre-order from Towne Center Books

When finalizing your order from either store, there will be a space to add a note. Please write that you'd like the book signed and let them know if you'd like it signed to a particular name.

If you've pre-ordered the book in any format from another venue (including library holds!) but would like to participate in the pre-order giveaway, **register here** and (while my personal stash lasts) I'll send you a notebook and a signed bookplate.

New Podcast

In other news, I have started a bi-weekly podcast with my dear friend, Alice Carbone-Tench!

Apple Podcasts

Substack

Now That We Think About It is a labor of love, a bright spot in my life (as is Alice) and a way for us to explore ideas around our shared human experience. We'd love for you to listen and then email us to tell us what YOU think about the topics we discuss. (Psst! You'll definitely want to listen to our Monday, May 5th episode, when we have a VERY SPECIAL guest joining us to discuss Home of the American Circus and the concept of home.)

A Literary Luncheon

And, if you happen to be in the Bay Area on May 6th, I'm doing a pub day event with my friends, Renee Swindle and Regina Marlerwith Towne Center Books in Pleasanton. It's a luncheon event and for those of you (like me) who have to be Covid-cautious, it's outdoors! Tickets required. More details here.

And a HUGE thank you

Thank you for sticking with me through all of the news in this letter -- and for sticking with me over the years--I've known so many of you since my first novel came out in 2010 (and some of you from way before that!). Your support and encouragement is why I'm still writing and sharing my work. You mean the world to me. And I can't wait for you to meet Freya and Aubrey, Jam, Eddie, Hans, Bee, Shray, Gus, and Shorty, and take you on a visit to my hometown. I hope this book will leave you with a sense of belonging, warmth and feeling understood.

Sending you so much love,

❤ Allison Larkin

What I’m enjoying this month:

• Music: Tod Weidner, We Are Soldiers

• Books: Francine's Spectacular Crash and Burn by Renee Swindle

• Movies: Fresh Kills by Jennifer Esposito

• TV: The White Lotus

• Articles & Essays: Jennifer Esposito’s Film ‘Fresh Kills’ Deserves More Acclaim by Amy Lee Wheeler

• Newsletters: Middle-Aged TV Addict

The acclaimed author of the “lyrical coming-of-age novel” (Good Morning America) The People We Keep returns with a luminous new story of redemption, breaking generational curses, and the power of family in its truest form.

After an emergency leaves her short on rent, thirty-year-old Freya Arnalds bails on her lackluster life as bartender in Maine and returns to her suburban hometown of Somers, New York, to live in the house she inherited from her estranged parents. Despite attempts to lay low, Freya encounters childhood friends, familial enemies, and old flames—as well as her fifteen-year-old niece, Aubrey, who is secretly living in the derelict home. As they reconnect, Freya and Aubrey lean on each other, working to restore the house and come to terms with the devastating events that pulled them apart years ago.

Set in the birthplace of the American circus, this deeply moving novel is an exploration of broken families, the weight of the past, and the complicated journey of finding home.

Add Home of the American Circus on Goodreads!

Add The People We Keep on Goodreads!

In November, I pulled a death row dog from the shelter with the idea that we’d foster him. We’d fostered once before and that dog was amazing. He was adopted by an incredible person who still texts me updates of their fantastic beach day trips and park adventures. Being a foster was one of the most beautiful things I’ve ever done. And even though it was a lot for me to go through emotionally, I felt like I could do it again. But three days in, I was so madly in love with this strange little being that there was no way I could give him to another family. Also, I needed him. He brought brightness to my life at a time when I could have been sucked into the depths of despair.

On a Sunday night, I’d seen a post on Nextdoor about how Bosley was scheduled to be put down on Wednesday. Shelter volunteers posted pictures and videos of this 22 pound, four-year-old1 buddy who looked like what my best friend affectionately calls a “spare parts dog.” He has a perky little tail that’s oddly curved, stubby legs, a very long body, and a disproportionately large head with disproportionately large ears. He has big brown spots on his bright white fur and freckles on his eye lids and a ring of dark gray around his pupils that makes him look like a cartoon dog. He also looks a little like someone ran Roxy through the wash and she came out shrunk and faded. And I knew it was a bit simple of mind and heart, but while I am aware I cannot save every dog, I simply could not stand the idea of a dog who reminded me of my dog being euthanized. In the videos, Bosley stood on his squat little hind legs to hug one of the volunteers as she knelt to pet him. He wagged his tail when they talked to him, and came when they called for him, even though, as a stray, Bosley was a name he’d been given on intake two weeks prior. Apparently, he did great in the play yard getting individual attention, but he was a wreck in the kennel, and had started self-harming.2

It was not a good time for me to foster a dog, and also, I couldn’t stop thinking about him. On Monday, the shelter was closed, but I was able to talk with one of the volunteers3 who had posted about Bosley. Because he was on the euthanasia list and considered a problem dog due to his extreme stress, he couldn’t be pulled by an individual person, and I needed the backing of a rescue. By Monday night, I had the support of the amazing rescue who saved Roxy, and they’d coordinated with the shelter so I could set an appointment to pick up Bosley on Tuesday morning.

Three hours before my appointment, I woke up to word that my mother died Monday night. We’d been estranged (by my doing, for my emotional health, well-being, and, frankly, survival) for over twenty years. It was an odd feeling to know she was gone, and to be honest, I don’t have a enough of a handle on the intricate emotions around that loss to sum it up in any way that fits into this story. But I felt strongly that the best thing I could do on the day I found out my mother died was to go save someone. I try not to put too much stock in fate or the idea that the universe has plans for me or anyone else, but also, it kind of felt like fate.4

And then I showed up at the shelter, took a ticket from the machine like I was waiting for deli meat, showed my ID when they called my number, and they brought out this perfect little dog who was somehow even cuter than his photos. Several staff members came out to hug him goodbye, and then he walked out to the parking lot with me like we were old friends. He had absolutely no qualms about getting in my car, and really did seem to understand that I was taking him someplace better.

Roxy loved him, then hated him so much I thought we’d definitely have to just be his foster family, then hated him so much I thought we might have to find him a different foster family, and then loved him again (which meant we could keep him).

It has not been all cuddles and joy. After his neuter surgery and teeth cleaning, he had a paradoxical reaction to a sedative and was terrified of everything and everyone until it wore off. He seems to have had some bad experiences with men, and if my sweet, calm, gentle husband accidentally surprises him, he’ll bark like an intruder has materialized out of nowhere. And while they’re both fine on walks separately5, walking Bosley and Roxy at the same time is an exercise in chaos. When we see dogs we know, Roxy wants to go see her friends, but she doesn’t want Bosley to go see her friends. And Bosley would like strange dogs and strange men to stay clear of us. So, it’s a process. We’re working on it. Bosley is actually an exceptional listener and will usually turn to me when I call him, even in the throes of telling off a Goldendoodle. He’s the most food-motivated dog I’ve ever met, and he’s also extremely praise-motivated, which makes training much easier. I effectively trained a reactive German Shepherd to ignore other dogs completely, so I don’t feel that any of this is beyond my ability. But his barking was really irritating. And then the other night, I had a perspective change.

We were all sitting on the couch and Bosley caught his reflection in the picture window in our living room after the darkness turned it into a mirror. He jumped over the back of the couch and ran to the window and barked at himself at full volume. And instead of being annoyed by the racket, I thought about the situation from his point of view:

Bosley was sitting on the couch and a FLOATING GHOST DOG appeared at the second story window, and he was like “Not today, Ghost Dog, this is my family,” and felt that as a now 25 pound dog, he was the guy who should speak up to protect us.

I’m tearing up writing this, because while it may seem funny or simple for a dog to bark at his own reflection, the intruder at the window was very real to him. And I cannot get over the bravery of this little spare parts dog—who has clearly had a life where people let him down—trying to save his family, even if he’s not sure he’s up to the task.

So while rescuing a death row dog is not the easiest thing I’ve ever done, it’s also not even close to the hardest and it’s definitely one of the best. It has been a lot of cuddles and joy. At night, Bosley sleeps on his back under the covers and the sound of his sweet snoring lulls me to sleep. He sits on my lap on the couch while we watch TV and presses his disproportionately large face against my face like he wants to eliminate any and all space between us. When I’m making dinner in the kitchen, he comes to see me, standing on his hind legs to ask for a hug. He and Roxy play hard and sleep hard and keep watch of the neighborhood from our living room window. And we are all safe from floating ghost dogs on Bosley’s watch.

For the most part, lately, I’ve been compartmentalizing as best I can—getting things done, grasping at joy, and trying so damn hard to figure out how I can best be of use in the world. I was raised in chaos. I know how to survive in chaos1. I’m good at putting my head down and trucking along. But today, at the tiniest little slight—nothing even worth mentioning—a situation I could tell had other explanations and I was most likely misinterpreting and the other person would be horrified to know I felt slighted—I had the urge to lie on my back on the floor and cry. I wanted to surrender to the sort of crying where tears stream from your eyes down the sides of your face, soaking your hair and the rug, and there’s no stopping them until the cry reaches some kind of sensible, natural end. But right now every feeling I’ve ever had is trapped in my throat or behind my eyes, and they are not going to budge. They’re just there, waiting for a stubbed toe, or a spilled bowl of cereal, or a pharmaceutical commercial about a new pill2 that allows a grandmother to play with her grandkids again.

I’m fine. I’m tough. I don’t have shame about feeling like this. It’s just uncomfortable and I wish I could have my floor-cry already and be done with this emotional log jam. I’m mentioning how I feel because I don’t think we talk about these days enough. We don’t tend to chat about how to hold shapeless sadness, or admit when the mundane hardships of being human get the better of us. I’m sure you feel like this some days, and I’m sorry for it. You have my empathy. I have days like this too, and now you know, and we’re even better friends than we were before.

But don’t worry about me. I have a sweet little dog who sleeps on my shoulder3 while I write. And even when all my feelings are trapped in my throat and my face, I feel a little better when he snores on me.

When I was thirteen I got Toxic Shock Syndrome and almost died1. After being released from the hospital, it took several months before I was well enough to return to school. I had horrible headaches, the skin on my hands and feet peeled off in large sheets, and the long-term high-dose antibiotics I had to take made me constantly nauseous. I was too embarrassed to tell friends why I was sick and sunk into myself completely. Being trapped at home was also definitively not a good thing for me. But both my parents were working, so I had a little freedom each day, and every afternoon the Lifetime channel aired two episodes2 of Spenser: For Hire. Ten minutes before Spenser-time, I’d drag myself into the kitchen and make a huge bowl of popcorn with an obscene amount of salt.3 Then I’d sit on the scratchy plaid couch with our orange, yellow, and brown chevron-knit afghan wrapped around my shoulders, ready to escape into a world that made sense.

Robert Urich, who was handsome like Cary Grant, played Spenser, a private eye in Boston who often worked with his partner, Hawk, played by the equally handsome and effortlessly cool Avery Brooks. The list of guest stars includes actors like Sarah Michelle Gellar, Lawrence Fishburn, Angela Bassett, and Frances McDormand, back when they were day players. Spenser is a fighter, but he’s also a lover. He exercises at a boxing gym, and cooks recipes he learns from watching Julia Child. He struggles with his Catholic faith when his girlfriend, Susan, decides to have an abortion, but ultimately supports her right to choose.4 They stay together until she leaves to advance her career (but spoiler—are reunited in Season 3). Both women Spenser dates over the course of the series are extremely smart, have impressive careers, and challenge his opinions. Susan is a psychologist. Rita is the Assistant District Attorney. He treats them like people.5

In Spenser’s world, things don’t always go right; they aren’t always fair. There is fallout from his choices, even when he’s done the right thing. Spenser is fallible in action but ultimately proves to be unfailingly righteous in intention. We understand his disappointment when his good intentions are not enough. He talks about his struggles and feelings in warm, charming voice-over, and while his speeches are laden with film-noir cliches, it feels like he’s confiding in the viewer as a friend. At thirteen, alone, struggling with my home life, my health, and a shocking new understanding of my mortality, being Spenser’s friend was important to me. Having those episodes to look forward to pulled me from one day to the next. I wanted to be him. I wanted him to love me. I wanted to be Susan, and Hawk, and Rita too. I still have a blue beanie I bought as a kid because it looked like the one Spenser wears.

I’d searched for Spenser: For Hire episodes on streaming many times over the years, with no luck. Then today, on a quest for a photo of Robert Urich to send to a friend, I discovered that it’s free to watch on Tubi. I immediately clicked over and hit play on the first episode. The theme song made my heart swell and I felt a kind of joy and comfort I imagine some people get from the idea of going home. As a kid, I think I found my sense of home in escapism, and I’m sure objectively, there’s something sad about the fact that many of my favorite memories are from films, TV shows, and books, but I’m so thankful for them. The Spenser: For Hire theme song is a signal for my nervous system to calm. For the next forty-five minutes everything will be relatively okay, because even when things don’t go as planned and people make mistakes and bad things happen, Spenser will keep trying to do the best he can, Susan will help him tap into his conscience, and there’s always a good chance Hawk will show up to save the day.

This is why telling stories matters far beyond the original intention of the story itself — why we can never truly know who we’re writing for and how it will touch them. I am certain no one involved with making Spenser: For Hire had any inkling that the reruns would give a sick thirteen year old girl a reason to get up every day. They were telling the best story they could with the source material6 and resources they had. But it really and truly made a difference to me.

I hope I’m not getting a migraine, I thought.

The first time I ever got a migraine, I was driving back from getting a haircut and the whole world suddenly turned blue, as if someone had placed a pair of tinted glasses over my eyes. When I got home, dizzy and trying to run for the bathroom, I projectile vomited across the kitchen floor. Later, I learned that my neck plays a big part in migraines, and the first one happened because my neck and salon sinks are not friends.

I have the hypermobile form of Ehlers Danlos Syndrome, which basically means my connective tissue feels its role is more of a suggestion than a demand. My ribs pop out of place if I sit funny. If I don’t support my knees with a pillow when I put my legs up, they’ll bend too far the other way and hurt like hell when I finally stand up. If one muscle gets too tight, it will yank other parts of me out of alignment. I’ve been like this for as long as I can remember—decades before I understood what was happening—so my basic mannerisms include a million little accommodations I didn’t even realize were accommodations.

The previous Sunday, I installed our new garbage disposal, and spent a lot of time trying to hoist the disposal up to the hookup with my right arm before I gave up and asked Jeremy to do it. So over the week my shoulder became tight and sore. And I'm forty-seven years old and on the wild hormone ride of perimenopause. And the barometric pressure was on its own wild ride last week. But I didn’t have a headache on Thursday morning. I just felt like I couldn’t see my face.

Thursday night was when the headache showed up. It was intense, right-sided, when my headaches are usually on the left. Nothing I could do at home1 would make it better, and I did not want to go to the ER. I spent several early Friday morning hours vomiting—Bosley frantically running to the bathroom with me each time, scratching at my back while I puked, like he thought could save me if only I’d let him help.

I tried to do my neck stretches. I drank water, pounded electrolytes, and irrigated my sinuses. I watched the barometric pressure on my phone. I tried to sleep. Roxy was scheduled for a teeth cleaning and needed to be at the vet at 8 am. I was resigned to have Jeremy take her2, but by 6 am, the barometric pressure was on the rise. My headache switched to the left side of my head suddenly, like a fever breaking, and then slowly started to fade. My nausea was gone, and my face looked like my face in its entirety, so I managed to pull myself together and get Roxy to her intake appointment. The vet tech told me Roxy would be there all day and I should plan to pick her up around 5ish.3

When I got home, I felt almost normal, just extremely tired. Bosley and I went for a walk with our neighbor. Then I took a long hot shower and climbed back into bed — if I didn’t have to pick up Roxy until 5, I was going to sleep the whole day to hopefully stave off any kind of relapse. Bosley lay across my chest with a sense of authority, as if he were attempting to protect me from whatever demons had taken over my body the night before. We both fell asleep. I know he was snoring loudly. I think I may have been too4.

The phone rang not long after—the vet was calling to say that Roxy had been first on the roster and was already done. Her teeth looked great — no extractions. She was so amiable that they hadn’t had to give her a sedative to put in her IV, so she’d just had the sedation for the procedure and was already coming out of it. Could I pick her up at 2:30?

I went back to sleep, determined to make the most of my whittled downtime, but within the hour, my phone rang again. Roxy was wide awake and had a lot to say about it5. Could I come get her now?

Roxy was indeed wide awake at 12:45 in the afternoon. She’d had a lovely nap under sedation, was not at all tired, and once we got home, she spent the rest of the afternoon reporting on the indignity of being placed in a kennel while she waited for me to come and get her6.

Needless to say, I spent Saturday exhausted. I felt a bit wobbly over the weekend, but, thankfully, my migraine did not rebound. And all of this is a great big reminder that I have to be careful about my neck.

On Saturday night, I ran the dishwasher, and noticed a little puddle on the kitchen floor. One time, a few years ago, I closed the dishwasher on a knife that got in the way of the seal and water spilled out onto the floor during the rinse cycle. So I mopped it up, checked the seal, and finished the cycle. We’d been behind on dishes, so when that round was done, I emptied and reloaded and ran it again. I was about to go to bed, but I have this obsessive need to check that the oven is off before I can fall asleep1. When I went back into the kitchen the throw rug by the sink was soaking wet. I heard rain, but it wasn’t raining outside and when I opened the cabinet under the sink the (at least twenty year old) garbage disposal was treating us to a torrential downpour, like a rainforest display in a nature museum. I turned off the dishwasher, unplugged the disposal, mopped up the mess, hauled the dehumidifier up from the garage, and pledged to call a plumber on Monday. We have a double sink. We could use the other side until then and hand wash our dishes—no need to pay weekend rates.

But I have Mast Cell Activation Syndrome and need to be extra careful not to get Covid. Hiring someone to come into our house feels extremly vulnerable and asking a plumber to wear a mask does too. So I googled “garbage disposal DIY,” and lay in bed watching installation videos. “I can do that,” I thought. Last year, I installed a sink with foot pedal controls in our laundry room. This actually seemed less complicated.

If you ever need to run to a hardware store to buy an emergency garbage disposal, Super Bowl Sunday is the day to do it. The store was a ghost-town. And as an added bonus, the guy who helped me didn’t balk at my mask, and talked through everything I needed to do the install with me as if he believed I could do it.

I spent a few hours under the sink and now we’re back in business. I had to get Jeremy to help me lift the garbage disposal onto the mounting bracket, because it was heavy and awkward (although, Reddit says a car jack will also get the job done) but otherwise it was straight forward, and I only cried once in the whole process.2

I’m always extremely moved by the effort of people who teach others how to do things on YouTube. As a kid, I always wanted to learn how to build things and fix things, but as a girl, none of the men in my life ever thought to teach me. How-to videos are an incredible equalizer. I’ve learned how to wire ceiling light fixtures, install flooring, fix toilets, change furnace filters, and cope baseboard joints through the step-by-step teachings of generous strangers on the internet, and I am grateful to all of them.

So yes, I could have called a plumber on Monday, and maybe it would have saved me some tears and frustration, perhaps he would have worn a mask without a second thought. But it probably wouldn’t have taken less time when all was said and done—calling around to find someone, waiting for them to arrive within a several-hour-long time window, waiting for the job to be done, settling down after. This way, I saved a little money, learned a new thing, and got to run the dishwasher Sunday night. No indoor rainstorm. And our new garbage disposal is really quiet.

I have ADHD, which comes with a whole lot of baggage. Most people who grow up with undiagnosed ADHD (I was diagnosed in my late-teens as a college student) have a long history of feeling a bit behind the 8-ball, which frequently manifests in some pretty abusive self-talk. People with ADHD often have issues with time management—or even just understanding time on an intuitive level. To an ADHD brain, time is often relative to task, so we are known to “lose time.”

Additionally, a lot of people with ADHD have varying levels of what is referred to as “Pervasive Demand for Autonomy,”1 by many members of the neurodivergent community. This is basically a tendency to feel boxed in by demands that conflict with a sense of freewill.2 PDA can exist at varying levels and can be situational. And while it’s often discussed as part and parcel with ADHD, as if the basic wiring of an ADHD person is somewhat contrarian, I can certainly see a case for PDA as a reaction to what it means to be a neurodivergent person in a world designed by people with neurotypical brains.

I don’t actually struggle with my ADHD when left to my own devices. I write books and paint rooms and build gardens and install new flooring in my office and love myself and my mind. I’m highly motivated to do the things that make sense to me. I struggle with my ADHD when it comes to bureaucracy, meaningless (to me) social constructs, artificial timelines, and other complex systems designed to accommodate a linear mind (and no one else).

In my twenties, I had a therapist who told me, “The world was not designed by or for you,” and it knocked my socks off. When I repeated this to a friend, she said, “Wow, that’s really harsh,” but to me it felt like relief. All these systems I struggle with are actually a struggle, because they weren’t set up by someone who thinks like I do. It’s hard because it’s hard3 If the world had been set up by neurodivergent people, I think neurotypical people would struggle to make sense of our systems and social structures.4 I often joke that neurotypical people just got around to making all the systems faster, since they didn’t have a rotation of eighteen projects going at once. So as a result, we have a ridiculous tax system, the electoral college, DMV forms, standardized tests, and cable installation service window times that span entire afternoons — but if everyone had just waited a little longer for the neurodivergent people to circle back around, we might have ended up with sensical systems. Except it’s not really a joke. It takes a lot more time to work out systems that make sense for everyone. It takes a lot of empathy to consider that not everyone’s brain works like yours. And since neurotypical people generally only have to walk through life acting like themselves, they don’t have a lot of practice in thinking like someone with ADHD. Anyone who believes their worldview to be THE worldview, is not encumbered by doubt and concern, not because they know better, but actually (very possibly) because they don’t know better.

So all of this is to say, that people with ADHD have a lot of experience walking through a world that doesn’t work for them (while trying to pretend it does), and it’s exhausting. Making a demand on someone’s time when the whole entire world is set up for their neurotype is not the same thing as demanding something from someone who is constantly swimming upstream in a world that is not made by or for them. And it makes a whole lot of sense to me that demands feel dangerous (or at the very least, inordinately exhausting) to people with ADHD. But since us ADHDers grew up swimming upstream, we don’t always have a conscious awareness of this added level of difficulty, so we decide that something is wrong with us when we have an aversion to demands. Therefore, on top of all the other ick, the demand has acquired shame. No one likes to do tasks that feel nonsensical, or that run the risk of suddenly becoming nonsensically complex. No one likes to do things that come with a slimy layer of shame.5 This avoidance of demands — this desire for autonomy — doesn’t seem like a pathology to me so much as an equation of cause and effect created by living at a high level of overwhelm while bearing the scars of trying to squeeze ourselves into that sharp-edged box neurotypical people slide into easily.

So all of this is to say that even though I understand the equation and the variables and many of the inequalities, I still walk around with the scars of someone who went through grade school as an undiagnosed ADHDer. If I make a to do list, I will have a little panic about the need to check those items off, and the way those items will demand my time, and what that means for my sense of autonomy. A to do list makes me feel claustrophobic. If I make a to do list and see items I dread lingering on that list, I become slimy with shame. The voice in my head morphs into my meanest grade school teachers, and I feel the kind of panic I felt when I was stuck in seventh grade math class in one of those desks with the chair attached SO YOU CANNOT EVEN PUSH YOUR CHAIR BACK A LITTLE AND TRY TO GET COMFORTABLE. And even though I’m 47 years old, and sitting on a couch of my choosing, sandwiched between two snoring dogs, my body reacts like a child with an actual screaming, throbbing lack of autonomy.

TO DO LIST

1. Call the car dealership about the recall

THAT STUPID ATTACHED DESK CHAIR IS HARD MOLDED PLASTIC AND IT’S BRUISING MY TAILBONE AND THE CLOCK IS TOO LOUD AND THE KID NEXT TO ME SMELLS LIKE EGG SALAD AND MY PENCIL POINT IS OBSCURED BY A SPLINTER SO IT SCRAPES ON THE PAPER AND I DIDN’T EVEN KNOW WE HAD HOMEWORK LAST NIGHT HOW DID EVERYONE ELSE KNOW ABOUT THE HOMEWORK!?!?!

Suddenly, I am sweaty-palmed and nauseous. And also, I know when I call the car dealership they’re going to have to call me back, which will require a neurotypical conversation6 about unknown details at an unexpected time—which will cut into my creative work time—which will make it hard for me to even get settled into creative work time, because this call may or may not be coming, and it requires me to be a person completely different from who I actually am (whereas, my creative work requires me to be completely and totally and vulnerably myself).

I can imagine that if you are a neurotypical person reading this you’re like, “Oh my god, get over it. Just do the thing.”

And to that, I say, “Kyle, the world is made by and for you, and you never made your math teacher cry in the middle of class because she couldn’t understand why you didn’t understand quadratic equations even after she explained them the exact same way but louder four separate times.”

The whole issue is that it’s not just a mental block, it comes with the primal physical warnings our bodies give us to enact avoidance. That trip to the post office is a rattlesnake on the trail, a mouse in the pantry, a bad guy in the bushes—the way your knees lock up and your face flushes and your heart is telling you turn the fuck around and then also, it’s all coated in a thick layer of hot, slimy shame, because it’s just a quick errand and people do little errands all the damn time and why can’t you? But as human beings, we are not wired to walk face first into pain. So even if you, Kyle, do not understand why a to do list could be painful, maybe you can think about that feeling of pain in a different context, and activate your empathy to layer it into this situation that you have not experienced. Okay, it’s just calling the car dealership or mailing a package for you, but what about that time you got up in front of a whole room of very important and influential investors and forgot what you were going to say, or split your pants, or the chair you sat in made a fart sound and nobody laughed so you couldn’t even joke about it AND YOU WANTED TO RUN OUT OF THE ROOM BUT YOU COULDN’T. How did your body react? Did you get that cringy feeling that sends lightning into your stomach and sharp pains behind your teeth and you wanted to cry or crawl under the table but you couldn’t? That. That feeling and it’s real and no less painful, except it’s about a to do list.

But, Allie, you say, “You’re a novelist who has written five books and a tax-paying citizen who has a drivers license from the DMV and drives a car with a fuel pump replaced by the dealer after the recall.”

Yes. Yes, I am. Because firstly, most ADHDers can white-knuckle that painful shit like nobody’s business. Our whole lives are a navigation of struggle, and with the right burst of dopamine and adrenaline, we have the extraordinary ability to muscle through those excruciating feelings (but then we may be really exhausted and cancel plans, and forget to answer texts for three days)7. And secondly, I don’t make to do lists anymore. I make DONE lists.

When my head is swimming and I’m super-stressed and the intersection of me and the neurotypical world feels like it’s hanging over a dark pit of gurgling lava, I don’t write down the things I need to do (I know what they are — all those horrible tasks wedge themselves into my consciousness like foxtails). Instead, I write down what I’ve done.

A different therapist recommended this practice to me years ago, when I complained that I felt like entire days disappeared and I never accomplished anything. And of course, when he told me to do it, I didn’t want to. But later, when I realized that I’d spent three hours researching primary care doctors—which was a real and necessary task that took time from my day—I wanted to give myself credit for that work. So I wrote it down. And then, high on that accomplishment, I sent an e-mail I’d been meaning to send, and I took the garbage out, and I really liked the pen I was using, so I went and cleaned the bathroom and wrote that down too. I made dinner. I took the dog out. I texted with a friend who was having a bad day. I tightened the screws on a saggy cabinet door. And wrote it all down. Some of the things I wrote down were parts of my every day life and I had been oblivious to the time they took. Some of them were foxtail-tasks and I knew they needed to be done, because they’d been stuck in my brain, nagging me. If I’d written those tasks out, I would have felt overwhelmed. I would have beat myself up for not doing them already. I would have felt trapped like a kid in math class. But keeping track of what I’d done was a whole different thing—it was a list of my daily successes. You can’t be trapped by the tasks you’ve already accomplished.

I don’t always make done lists. Sometimes, when I have a deadline, or I’m trying to break ground on a new draft, I need to actively shut off my interaction with the outside world. I have to decide if I’m going to be a writer or a person for that span of time, and push off tasks until later. So I don’t write down that I walked the dogs, even though I always do, because I don’t want to get hooked on the high of tiny accomplishments when I have larger, slower, vital work to do. But when I’m trying to put my life back together after a long streak of being a writer instead of a person, I write down every little task I complete, and it encourages me to do one more thing, and maybe one more after that.

Sometimes, I keep a list of reminders next to it—things I could add to my done list, if I did them.

“But isn’t that a to do list, Allie?”

NO IT IS NOT A TO DO LIST! DO NOT CALL IT THAT OKAY? IT IS JUST A LIST OF THINGS THAT COULD BE DONE IF I DID THEM AND WON’T BE DONE IF I DON’T DO THEM AND LOOKING AT THEM DOESN’T MAKE ME FEEL LIKE MATH CLASS BECAUSE THEY ARE NOT DEMANDS JUST SUGGESTIONS AND I HAVE AUTONOMY OVER MY OWN SELF OKAY?

Okay.

I’m sharing all of this in case you understand and the idea of a done list might feel good in your bones, or in case it helps you understand someone you love. It’s okay if you don’t get it. I don’t understand how Kyle’s brain works. We’re not the same, me and Kyle.8 I hear he does his taxes early for fun, then folds the laundry he didn’t forget to move to the dryer and checks those things off his to do list without a second thought.

I’ve had a painting in my head for at least five years, and I even bought paint and a canvas and brushes. But I don’t know where or how to start. I don’t trust my skills. I’m afraid of not being the artist I can be in my head as long as I never try. And it’s silly. Who cares? Who gets to decide what’s good? Why am I depriving myself of joy to maintain a false sense of self? That’s not serving me in any way.

So I’m working on building myself up. Getting okay with imperfection. Working up the muscle of visual creation, so my hands want to make things, and I remember the feel of markers and paint.

Today, that looks like drawing shapes on a tiny envelope. I like that when viewed alone, none of those shapes are perfect—all of them are specifically imperfect. But together, that imperfection is bright and colorful and charming. And the next time I send a care package to a friend, that cheerful envelope will hold a little love note. Nothing has been wasted. Only improved. And my day was a little brighter because I spent some time doodling.

Last year, in a moment of feeling completely overwhelmed by all the sadness and instability in the world, I decided to raise some money for World Central Kitchen by offering zoom coffee dates to pick my brain about writing or life or dogs or my books. I required a donation to World Central Kitchen and matched each one. The time between thinking of the idea and putting it out there was under half an hour. I had no idea if anyone would take me up on the offer, but I didn’t give myself any time to second guess.

I spent the next few months having coffee dates with people I knew, people I didn’t know, and people I’d been in contact with for over a decade (through the magic of social media) but had never actually talked with. We had amazing conversations about creativity and doubt and how to find and maintain faith in our art. I was left with the strong sense that so many of the people I’d talked with needed to know each other. So, again, I didn’t second guess myself, and I started the Truehearts Collective.

I run Truehearts through Patreon, so I can pay myself for the administrative work of the group, pay our visiting artist contributors a small honorarium, and continue charitable donations to worthy organizations. We meet over Zoom to discuss our creative struggles, and work through what it’s like to be a creative person in the world. We also have a book and film club to discuss other people’s art. I don’t worry about membership numbers, or meeting attendance. I’m in it for the love, for the community, for the people who show up and support each other. All but one meeting a month is recorded and available behind the paywall, so members who can’t attend live are able to check in and feel part of the community. And if only two people show up, we still have a great conversation. If we have a packed house, we have a great conversation, too. But the moment is the focus. We’re not creating content. We’re connecting.

The community we’ve built is a constant reminder of the comfort of kind, creative people — that there are other truehearted artists in the world. Our meetings are something to look forward to, a safe space to be ourselves. I know right now so many of us are overwhelmed and heartbroken, scared for the state of humanity. I know that art and community don’t solve everything, but it does help hold our hearts together, boost our spirits, and give us the strength to keep going. Starting this group is the best thing I’ve ever done, and I’m so glad that I didn’t let myself think of all the ways it might not work, or all the reasons I shouldn’t do it. In times like these, our cozy little corner of the internet feels precious and necessary.

So, if you need us, join us. We’ll be so happy to see you. All artists are welcome, and while we talk a lot about writing, artists who work in any medium at any level can join—even if you’re just hoping to get started on your first project and haven’t quite found your momentum yet. There’s also a membership level just for book and film club members, if you simply want a warm thoughtful chat. This month we’re discussing The Princess Bride and reading As You Wish (Cary Elwes memoir about the making of the film).

You can check out our schedule at the Truehearts Collective link below. I’ve also added a link to World Central Kitchen, because donating to them always feels like a simple way to do some good.

I won’t cross-post too much, but I will link to our schedule every month, so you can see if anything we’re planning to talk about is something you might want to be part of.

xoAL

World Central Kitchen

Truehearts Collective February Schedule

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