Remember when I tried to hike Elk Mountain/King’s Mountain Loop back in May and didn’t finish? That’s because I had a panic attack—3,000 feet atop exposed trail in inclement weather while hiking with someone I barely knew. DIZAZZ.
I feel like the weather had a lot to do with it. I’m not really afraid of heights—not when my feet are literally on the ground, anyway. I don’t like flying, and I don’t like driving on elevated roadways (bridges, windy sides of mountains, etc.). But if my literal feet are on the literal ground, I’m usually okay with height. Unless, apparently, there’s weather involved.
For the week prior to this hike, my hiking partner and I checked the weather daily. We knew this was going to be a tough hike (it’s rated “hard” on AllTrails, which we presumed, from the comments, was due to the elevation gain), and neither of us wanted to hike in pouring rain or super cold temps. We were prepared to delay the hike if we felt the weather called for it. It was chilly the day we attempted this hike, and a bit overcast when we began, but overall, the forecast seemed okay. Remember, we were under the impression the elevation gain would be the most difficult/technical thing we’d encounter.
Reader: We were wrong.
There were several stretches of incredibly narrow and steep trail that was exposed and required scrambling. I’m not saying this is the most technical or challenging trail on the planet. I’m saying it wasn’t what we expected, and personally, I wasn’t prepared for it. I think if the weather had been dry and warmer, this would be a non-story because we would’ve finished the hike. That’s not what happened.
Right as we reached what felt like the most technical part of the trail (steep grade, steep drop-offs, steep scramble), the fog rolled in and the rain started coming down. And with the change in weather and terrain, I felt the panic attack coming on. It’s an unmistakable, alarming feeling, especially when it presents with derealization, like it did that day.
A lot of resources describe derealization as feeling like “a dream.” To me, derealization feels less like living in a dream (“dream” has too positive of a connotation to me for what the actual experience feels like) and more like being stuck or suspended in a liminal space. When it’s happening, the more aware of it I become, the worse it gets—the further away from reality and outside of myself I feel, which freaks me the fuck out, and the more I begin to worry (panic) that I’m going to break with reality and that if I do, I might not ever make it back.
But wait, there’s more!
As the psychological pieces of the panic attack become more pronounced, the physical aspects of it kick in. Often, I start shaking uncontrollably, as adrenaline and cortisol start pumping through my body. My field of vision narrows, and can become unclear and spotty. Sometimes, my hearing becomes impaired—voices and other noises around me can sound diffuse and garbled, my ears might start ringing with a piercing sound.
On this particular day, my Raynaud’s decided to join the party, too. Raynaud’s is a condition in which certain areas of the body—often the fingers and the toes—become cold and go numb. The affected area usually turns white or blue. Cold temps and stress both activate and exacerbate it. Here’s what it looks like on/for me.
My Raynaud’s joining the party that day is significant because it meant that on top of intrusive thoughts, uncontrollable shaking, and impaired vision, my grip was shot, too. On their own and even though I was wearing very warm, waterproof gloves, the cold made closing my fingers challenging, and the rain made it difficult to get a grip on the scramble and tree roots, which I’d been trying to hold onto for stability. The numbness from the Raynaud’s meant I couldn’t feel my fingers.
So there I was, on the precipice of a mountain, about 3,000 feet above the ground in inclement weather, having intrusive thoughts, shaking uncontrollably, with literal tunnel vision, and unable to get a decent grip on the steep terrain around me thanks to (1) wet and cold weather that made gripping the scramble and tree roots I’d been gripping for stability up to this point incredibly difficult, and (2) my numb fingers that I couldn’t feel or properly close around the slippery scramble and roots. Also: wind. AND THEN: my trash-ass proprioception.
Proprioception refers to our ability to sense our body’s movement and location in space. It also plays a role in balance and coordination. I talk more about my proprioceptive differences in this post. Basically: Even in the best of times when there are no complicating factors, I have difficulty knowing where my body is in space, coordinating my movements, and balancing.
On top of all the regular panic attack-y things I was experiencing, I was trying to literally navigate this particular section of trail with proprioception that’s Not Great even when I’m not having a small personal crisis on top of a mountain in the wind and rain. At one point, I had three points of contact at all times, and eventually began scooting around the trail on my ass, trying to grip whatever I could—when there was something-ish to grip. Problem was, most of what was available to grip was roots, and because it was currently, and had for days prior been, raining, the roots weren’t exactly sturdy.
I knew that I needed my full attention on the trail. I also knew that wasn’t going to happen. I was putting so much of my energy and attention into trying to mitigate my panic attack. Ultimately, given all the variables—the panic attack + the Raynaud’s + my trash-ass proprioception + the elevation + the narrowness of the trail + the low visibility/density of the fog + the rain (the slipperiness of the trail and the scramble)—I didn’t trust myself to not accidentally fuck up in a situation that allowed zero room for error.
So I removed myself from the situation.
I looked back at my hiking partner and said, “I need to turn back.” With no questions asked and no shade thrown, she agreed. Which: THANK FUCK for a hiking buddy who isn’t a dick. Also, I’m proud of myself for making the decision I did. It wasn’t easy. It was the right call.
Learning I’m autistic has been such a game-changer (for the better) in so many ways. For example, it’s given me context for understanding my experiences, and more self-knowledge about how my brain and body do (and don’t) work together. And that context for my experiences and better understanding of myself has empowered me to make better decisions. Had this situation happened and I didn’t know I was autistic and how being autistic affects my proprioception (a word I didn’t even know before I learned I’m autistic), I almost certainly wouldn’t have made the same decision. I would’ve believed that turning back was weak and unforgivable—I would’ve tried to power through, and honestly, who the fuck knows what might’ve happened (autistic people are significantly more likely to die from injuries and accidents, and I’ve already passed the average life expectancy for autistic people, which is a whopping 36 years old).
I know that a lot of people think an autism diagnosis is a tragic thing. That it’s the end of the world. That’s because they’re uninformed. An autism diagnosis isn’t either of those things. In many, many ways, it’s life-changing (in a good way), and even life-saving, both directly and in-.
The panic attack was an all-around 0/10 experience—hard pass, return to sender, do not recommend. It taught me a lot about myself, though, and that’s 10/10 valuable information to have.
If something like this happens to you on the trail (or anywhere, really), you’re not crazy for it happening and you’re not stupid or weak if you decide to turn around and go back instead of trying to push through.
If this happens to someone you’re with (on the trail or not), don’t be a dick about it. Don’t push them to “face their fear” or “get over it” or “just finish” because y’all “came all this way” or “made it this far.” Be kind. Be willing to turn back/leave with them. Don’t make any shitty, judgmental comments. You don’t have to “agree with” or understand it, you absolutely should respect it. I promise you, a person having a panic attack doesn’t want to be having a panic attack (especially in public), and isn’t “acting crazy” “on purpose” “for attention.”
Hi, hey, hello! I have a lot I want to blog about. I simply do not have the brain space right now. There are a fuck-ton of moving pieces in my life right now, which is an actual nightmare for my autistic ass, which does not handle change well and which cannot function without rigid structure, schedule, and routine. So. While I wait for things to settle down enough for my brain to be able to string together coherent thoughts, I’m sharing a few book recommendations for two books that I’ve recently-ish read, and one that I’m currently trying very hard to read (see previous note about lack of brain space).
On Immunity: An Inoculation by Eula Biss.
I read this book over Fourth of July weekend and let me tell you, it was a trip to read this book when I did. Published in 2014, it references Roe v. Wade—several times—and in a way that assumes it will always be, which was particularly disorienting as Roe was repealed days before I read the book. And by way of addressing the inevitability of a future pandemic, it foreshadows Covid-19. Wild!
Biss is one of my favorite writers. Her writing is gorgeous, and she’s so, so smart. In this book, she merges sciences, medicine, personal history, cultural history, art, mythology, philosophy, metaphor, and ethics to discuss, as the title suggests, inoculation, vaccination, and immunity. In doing so, she highlights our interconnectedness, our responsibilities to each other, and the multidimensional nature of health. The result is, like everything else she writes (essays; books), stunning. My detail-oriented and pattern-recognizing autistic brain loves the connection of dots—the more dots, and the less seemingly related they are at first glance, the better. This book had dots. Lots of them. Big love.
Body Language: Writers on Identity, Physicality, and Making Space for Ourselves edited by Nicole Chung and Matt Ortile.
An anthology of previously published essays (culled from the Catapult archive) that describe and discuss the embodied experience(s) of health, disability, race, gender, sexuality, size, and shape. Didn’t love, didn’t hate, kind of liked, kind of didn’t. Ultimately, I think it’s a worthwhile read.
(I think my ambivalence lies in the book being an anthology, which means that although there’s a unifying theme that each essay is tied to, there’s inconsistency in overall structure, tone, and pace, because each essay is written by a different writer, and every writer has their own style. And, as we’ve established, my autistic brains likes consistency. That’s not the book’s problem, though. The book did exactly what it’s supposed to do. Also: What a great cover, right??)
I ordered this book while listening to this NPR interview with the author. It sounded irresistible—and it is. It’s so good. I admit, though, that I’m biased—I have a thing for books that discuss death and dying and the funeral industry (I’ve been around death from a young age—from the death of many acquaintances and friends over the years (cancer, addiction, suicide, murder), to once being married to a man whose entire job every single day for many years was to conduct funerals for military servicemembers being buried in Arlington National Cemetery, to combat-related deaths of friends of friends).
Each chapter is a mini profile a different part of the death industry and a person or people who work in it: embalmers, international disaster response workers, a former corrections officer who was the state’s executioner, a man who owns a business that you can hire to clean a crime or trauma scene (once an investigation is over, the police do not clean up—the task is left to the families/property owners, to either DIY it, or hire a trauma cleaner), a funeral director, the director of an organ donation organization, a death mask sculptor, a bereavement midwife, a person whose job is to dig graves, the operator of a crematorium, and the president of the Cryonics Institute.
I’m about halfway through and so far I’ve found every chapter incredibly fascinating and nuanced. Also, I deeply appreciate that this book highlights the humanity of everyone involved—both the dead and the living.
Five related books that I’ve also read and recommend:
- Dark Archives: A Librarian’s Investigation Into the Science and History of Books Bound in Human Skin by Megan Rosenbloom
- Smoke Gets in Your Eyes & Other Lessons from the Crematory by Caitlin Doughty
- Technologies of the Human Corpse by John Troyer
- The Butchering Art: Joseph Lister’s Quest to Transform the Grisly World of Victorian Medicine by Lindsey Fitzharris
- The Trauma Cleaner: One Woman’s Extraordinary Life in the Business of Death, Decay, and Disaster by Sarah Krasnostein
A fact about me is that I’m a documenter at heart (as if having a personal blog didn’t give that away), and an absolute sucker for a fun on-paper memorykeeping project (once upon a time, I spent five years running a memorykeeping blog, and working on the creative teams of the biggest brands in the business). I love a well-designed and well-crafted paper product, and all the cute little shit that can go along with it. Like my adorable mini stapler that looks like a whale.
LOOK AT HER! SHE’S SO CUTE! 🐳
Memorykeeping was a big part of my life for a long time. I’ve been out of the habit and the business for a few years now, and I miss it. I keep trying to get back in the groove with it, and I keep missing the mark, taking on ambitious projects that overwhelm me into freezing and walking away. So. I decided to try this very simple, low-stakes project instead.
I used a Hike Passport from Letterfolk. Letterfolk has a whole series of these “passports” covering a bunch of different activities, not just hiking. In the “Hike” one, there’s room to document 20 hikes, with some extra pages of fluff in the back. Each of the 20 documenting spreads has a templated page on the left and a dot-grid page on the right.
The templated page on the left has space to document details like the date, trail, location, distance, who you hiked with, the gear you brought, the weather you encountered, types of terrain, snacks you ate, how busy the trail was, how difficult the trail was, how long it took you to complete, and a few more. You can do whatever you want on the dot-grid page. I used it to include a photo from and the date of each hike. You could use it to sketch a scene from the hike, or journal about it. Or to preserve a pass, or piece of the trail map, or some other ephemera (wrapper from a snack?). Or a combination of those things, the sky’s the limit!
Usually, I print my photos at home (I use an Epson PM-400. I’ve had it for almost a decade. I love it. Definitely recommend). For this project, I printed my photos through Persnickety Prints. Their website is a little janky, but their quality and service is unmatched. I’ve used them for select memorykeeping projects for almost a decade.
Here’s a look at a few of my completed (“completed”) pages. I don’t fill out each field every time, just the details that I kept track of and that feel relevant to me for that particular hike. And I never use the “When I Finished I Felt…” field the way it’s intended to be used. I always put extra notes about the hike there.
Hike #2 this year, Wahkeena Falls Loop/Multnomah Falls:
Hike #7, Dog Mountain:
And hike #9, Elk Mountain/King’s Mountain Loop:
This little book is not a practical thing to bring with you on the trail. It *is* a fun and creative thing to do to commemorate your time on the trail. I think it’s a particularly great project for people who are new to memorykeeping, or returning after a break. Memorykeeping can be super overwhelming. This is a great project because it’s formulaic and simple. And because it doesn’t require a ton of supplies (date stamp and stapler not required), it’s a relatively affordable one, too.
Hike Passport: Letterfolk, $14.95 total. $10 for the “Passport” and $4.95 for shipping.
Stapler: Ellepi Klivia 97, $25-ish. You can find this on Amazon, but please consider supporting your local paper goods shop or craft store. If your local shop doesn’t carry Ellepi, try Little Otsu or Porchlight. Fun fact: Ellepi is a four-person Italy-based team, and they make all of their products by hand.
Date stamp: Miseyo, $11.99 plus shipping. I don’t remember what I paid for this total. I’ve had it for a while. Soz!
Photos: Persnickety Prints, prices vary. I paid $13.85 for these nine 3×4 photos—$4.86 for the photos (which included an up-charge because I went with the white border) and $8.99 for shipping, which: kind of yikes, I know. But also, the total cost was within my budget and I wanted to, so I did. For what it’s worth, their standard shipping (the default option) is incredibly fast and has never taken anywhere near 7-10 days to arrive, which makes that $8.99 feel like a better value than if the photos took forever to arrive.
Remember last week when I posted about my decision to stick with weightlifting as my primary sport instead of returning to CrossFit? Well, lol, I published that post on Tuesday evening, totally forgetting that this year’s CrossFit Games began the next day. (The Games are the Super Bowl of CrossFit.) And until I started watching this year’s Games, I’d totally forgotten how much I love the sport of CrossFit. I mean, I’ve known the whole time how much I love doing CrossFit. I’d forgotten how much I enjoy watching the elite and professional CrossFit athletes compete. IT’S SO HYPE!!!
Tbh, I didn’t intend to watch the Games at all, let alone as closely and fervently as I did (because the rush hasn’t yet worn off, I’m only slightly embarrassed to admit that I spent five entire days glued to three screens, watching the events on live TV while also scrolling related posts on social media on my phone and constantly refreshing the leaderboard on my laptop). I stopped following the sport in 2017, and until I began working 1:1 with a gymnastics coach at a local CrossFit gym in May, I hadn’t been around it much/consistently in years. (I’ve trained mostly out of literal garage gyms, strength and conditioning gyms, and powerlifting gyms since 2014.)
CrossFit—as a culture and as a methodology—has a bad rap. That first part is not without reason. CrossFit culture, especially at the corporate/HQ level, is something with which I take SEVERAL issues, and’ve always had a hard time getting behind.
As a training methodology and a sport, CrossFit has my support. I love CrossFit workouts (the intensity and diversity of movements and implements is a big draw for me), and I love the energy and vibes of CrossFit and CrossFit-ish gyms—in my experience, they’re more welcoming, more inclusive, more community-oriented, less intimidating, and less judgmental than traditional globo/commercial gyms (Gold’s, 24 Hour Fitness, etc.).
(CrossFit gyms are franchises. To use the CrossFit name and brand, gyms have to pay CFHQ an annual fee to affiliate. In the US, that fee is $3,000 a year. In 2020, thousands of affiliates worldwide de-affiliated after the founder and then-CEO published racist posts on social media following the murder of George Floyd. Also: sexual harassment allegations. See my notes above about having a hard time getting behind CFHQ culture. (There are signs CFHQ culture is changing. Different conversation for a different day.)
Many gyms that program CrossFit workouts but that don’t license the CrossFit name call themselves “strength and conditioning” or “functional fitness” gyms. They’re often staffed by coaches who hold CrossFit coaching certifications, follow the CrossFit season, and are community-oriented in the same way that CrossFit affiliates are. Essentially, they’re CrossFit gyms in everything but name. In my experience, this is often an “on principle” decision. These are the gyms I mean when I say “CrossFit-ish gyms.”)
Watching the Games this year was THRILLING. Across divisions, the athletes put on A Show. In the three main divisions—individual men, individual women, and team—it was a battle to the end. (The other divisions included teenagers, masters athletes, and disabled athletes.) I loved every second of it. I loved that my kids loved it. And I was surprised how much I still know about the sport (and the athletes who competed this year) considering I’ve not followed it for so many years and so much has changed—I was surprised I could answer most of the questions my kids and co-parents (with whom I was staying, and whose TV and living room I commandeered for three entire days (thanks, fam!)) threw my way. Honestly, I didn’t realize how invested in this sport I still am until I turned on the Games.
Which is why watching it was also a little…sad? Wistful?
When I started CrossFit—in early 2013—it wasn’t what it is now. It was still in the process of becoming. Back then, my goals for myself in the sport felt within reach. “Back then” felt like a golden era of the sport, both in the moment and all these years later. It was at the tail end of a time when it felt like you could be any Joe off the street, even one with little or no athletic background (like yours truly), and make it to the Games—or close.
Now? Lol, no.
Today, CrossFit is a bonafide sport. One that people begin training for as children. Both the Games and the qualification process to end up there have age group divisions that begin at 14 years of age. And many of the teens who compete in those age groups have already been doing CrossFit for years. (This year’s second-place female finisher, Mal O’Brien, is 18 years old. She’s the youngest athlete to win the Open, and to podium at the Games. Another top female contender this year, 17-year-old Emma Lawson, decided to compete with the adults instead of her age group. Out of 40 athletes in the individual female division, she placed 6th overall. Which: incredible.)
A common experience among those of us who learned we’re autistic as adults is grieving what could’ve been—who we could’ve been—had we known this essential piece of information about ourselves earlier. How might our lives now be different had we known then that we’re autistic?
Since learning I’m autistic and how being autistic affects my health and athleticism, I’ve wondered a lot about what could’ve been—where I might be and who I might be as an athlete—had I known I was autistic a decade ago, when I started this sport. Watching the Games last weekend amplified that feeling.
CrossFit has always been about performance for me. It has never been “just a workout.” From the beginning, my goal has been to be the best. I started competing in local events mere months after my first CrossFit workout. And I continued to compete for the next two years or so, sometimes as an individual, mostly as part of a team.
In CrossFit, workouts are done either “RX” or “scaled.” “RX” means “as prescribed.” Doing a workout RX means doing the workout without any modifications to the weight or the movement(s). Doing a workout scaled means doing the workout with modifications to the weight or the movement(s). Since the start, I’ve been stuck between the scaled and RX divisions—stronger and more skilled in many bodyweight exercises and non-barbell weighted exercises than in barbell-based strength exercises. Good at things like running, rowing, box jumps, wall balls, farmers carries, etc. Not so great at things involving a barbell—squats, deads, bench, presses, the Olympic lifts, etc. (Also not so great at skilled gymnastics stuff, like muscle-up, pull-ups, dips, handstand stuff, etc.)
For a long time—for years—I kept at it. Day after day I showed up and put in the work. After the initial wave of PRs that newbies to the sport ride, I began to plateau. I could not get stronger (I couldn’t put weight on my body or the bar), or improve in skill-based exercises. Frustrated, I stopped competing. Determined to figure it out, I continued training; I kept trying. I got serious about many things, including nutrition and accessory and mobility work, and I started paying for custom programming—workouts tailored to my goals and the things I needed to work on to meet those goals—and private coaching. None of it helped. Not really. Eventually, I started to regress. Then, I ended up injured.
Had I known back then what I know now—that I’m autistic, and that being autistic means my brain and body work differently—would I have had a shot? Would knowing I was autistic earlier have helped? Would I have been taken seriously by coaches and clinicians when I told them that things didn’t feel right? Would I have the injuries that I have? Where would I be if I’d had the context and language to understand and describe my experiences a decade ago? To advocate for myself in a meaningful way?
Where would I be if there was an accurate understanding, especially among people who work with athletes in the course of their training, of what autism is and how it impacts health, wellness, and athleticism? If clinicians (and coaches, for that matter) gave people the benefit of the doubt and believed them to be experts of their own experiences, instead of routinely dismissing and invalidating them. If there was less ableism and toxic positivity in the world of fitness. I think that things would be different—in general, and for my athletic career specifically. And I think they’d be different for the better.
Then again, maybe not. Maybe having that information earlier wouldn’t have helped me much, or at all. Maybe it would’ve worked against me. The general population’s understanding of autism and treatment of autistic people isn’t that great today, in 2022. It was worse a decade ago. Ditto in the medical and fitness communities, and re: relevant research. Maybe coaches would’ve refused to work with me had I told them I was autistic. Maybe I would’ve rejected my diagnosis and pushed myself harder, injuring myself more severely or even permanently. Maybe I would’ve internalized my diagnosis negatively and stopped training and trying altogether. Who knows.
I don’t think it’s helpful to dwell on it. I do think it’s okay to feel my feelings about it when they come up. And I think it’s important to have more conversations—and louder ones, led by autistic people, including non-speaking autistic folks—about what autism actually is, and how it intersects with and impacts health, wellness, and athleticism. Especially considering autistic people are among those who could most benefit from such discussions: Autistic folks experience significantly increased rates of all (ALL) major psychiatric disorders, nearly all major chronic medical conditions, and a number of rare medical conditions.
And, startlingly: Our life expectancy is right around 40 years of age.
To be extremely clear: I’m not saying that all, or even most (or any!), autistic people should be, or should want to be, competitive athletes. Or do CrossFit. I’m saying that autistic folks are one of the most vulnerable communities—we die younger/earlier, we’re at increased risk for injury, we’re at increased risk for illness (including chronic illnesses and other illnesses that aren’t well understood), we face more barriers to accessing healthcare, we experience high rates of medical gaslighting and trauma, the vast majority of us are under- or unemployed, many of us are uninsured, the list goes on—and people who work in healthcare and adjacent fields need to know and do better. For all of us, athlete or not.
If I sound salty, it’s because I am. I’m salty that I spent most of the last decade feeling like a failure as an athlete even as I worked my ass off, repeatedly being made to feel lazy, dramatic, undisciplined, and dishonest when I spoke up for myself and tried to communicate what I was feeling and experiencing. I’m salty that autistic people in general have such shit outcomes across every domain of life. I’m salty that so few allistic people listen to us, believe us, care about and center and support us, that our quality of life is seen as something to be earned, if it’s considered at all. I’m salty that autism is defined by supposed deficits, and that autistic people are pathologized—and consequently ignored, ostracized, vilified, and harmed—because of it.
I’m especially salty about all of this because I’ve finally found a gym full of people—both coaches and fellow athletes—who *do* believe (and believe in) and support and accommodate me. Who make me feel included, and worthwhile. Who recognize my value as a person, and my potential as an athlete. Who respect my boundaries, and my preferred ways of communicating. Who don’t make me feel stupid or small for needing different cues and more time to learn and master movements. Who are open to learning from and with me. I’m grateful to have found this space and these people. And I’m frustrated and pissed that it took so long and cost me so much. Where might I be if I’d had this acceptance and support from the start?
The answer, as annoying as it is, is: I don’t know. Maybe further along, maybe not. I try to not dwell on it. Sometimes, like during these last few days, I do.
Most days these days the question I try to focus on instead is: Where will I go now that I do have these things, now that I *am* part of a community that accepts and supports me? I don’t know—yet. I sure as hell intend to find out (although in weightlifting, not CrossFit, but you catch my dramatic drift, no?).
A note about the linked resources: Most of the resources I link to in the body of the post are, or reference, studies that were conducted with autistic children. Unfortunately, there’s not much research on autistic adults and their experiences, so these pediatric studies are often the best data we have to run with. ¯\_(ツ)_/¯
Last weekend, which was the final weekend that my two youngest kids (10 and 11) were in town, we hiked Angel’s Rest. I hiked this trail back in May. It was still pretty cold then—I was in leggings, long sleeves, and gloves that day—and not much was in bloom yet. Still, it was gorgeous. I was unprepared for how gorgeous it’d be once everything was in bloom. So many wildflowers. So much green. Such lush. Much wow.
The day we hiked this trail was the final day of a long stretch of way too many days above 90 degrees (historically unusual for Portland and the surrounding area, and quickly becoming the new normal, brought to you by climate change). We started early early—we woke up at 5:15 am, were on the road before 6:00 am, and at the trailhead before 6:30 am—to beat both the heat and potential trail traffic. It worked. On both fronts. We encountered very, very few people (just a few at the top), and no shit-ass weather. Praise be to our lord and savior, Jesus H. Styles Christ.
My older kiddo didn’t enjoy the hike (which surprised me, tbh), and mostly avoided being in photos. My youngest kiddo had a blast—he monologued at length for hours afterward that it was one of his most favorite days of his life and he wished he could live it again (MY WHOLE HEART!!!)—and was happy to be in photos (and gave me permission to share the ones he’s in that I’ve shared here).
The kids brought a disposable camera with them to Oregon, to document their summer stay out west. My youngest had fun using it on the trail, and I had fun witnessing his childhood curiosity and joy. I’m excited to get the photos back—once I figure out where we can have them developed. Do places still develop film??? Does one hour photo service still exist? (Remember how much of a thrill it was to get your photos back from the neighborhood Walgreens or Rite-Aid (or wherever)?)
When I hiked this trail back in May, I didn’t think the view was much different between the false summit (at the talus) and the actual summit (a few minutes past the talus). This time, I felt like there was a bit of a difference. Kind of. I still think the views beyond the talus and beyond the actual summit are pretty similar. The immediate surrounding areas at each location look (and feel) a bit different now that everything’s in bloom.
View from the false summit in May:
And from the same spot this time (late July):
So, like. Not a huge difference yonder. Definitely a difference in the immediate surrounding area. The fuller foliage and blooming wildflowers for sure make it feel and look so much more lush and lively. Honestly, the vibes at both the false summit and the actual summit were immaculate. Both are great spots to picnic or read or draw/sketch or journal/write or watch the sun rise or set.
Once we reached it, the kids and I explored the actual summit, which I apparently didn’t do last time. I actually didn’t know last time that there was more to explore last time? I guess maybe there wasn’t much to explore without all the growth to wade through? Back in May it was all just kind of…bleh at the top. This time, it was a small adventure to weave through the very narrow and overgrown trail. So many small pops of color all over the place!
I spy with my little eye a tiny and shirtless child through the greenery.
We found this bench, which the kids tried to carve their names into. We didn’t know this bench was there (I didn’t see it last time), and had no bench-carving implements on us. Sad! The kids tried using rocks, which didn’t work. They had fun with it anyway.
I’m so happy that one of my kids still wants to take photos with me, and I’m grateful that my other kiddo is willing to take photos of us. I know they won’t always want to do either. I appreciate that they were each willing to do one of those things on this day.
On our way back after wandering around the summit, my youngest ran ahead and climbed up these rocks. I stayed behind atop a different pile o’ rocks and took a bunch of photos of him. This one, with him flexing and making a face, is my favorite.
Our most exciting finds on this day: A bird egg, which I want to say is a robin’s egg but won’t definitively declare because I’m not a bird scientist or even knowledgable about birds and their eggs in the slightest, and which was already cracked/hatched when we encountered it. And a rabbit, which hopped away before I could get a photo. Also: several small chipmunks, all too fast to be photo-ed.
A few personal wins for me on this hike. One: My knees felt great. This time last year my knees were so fucked, I couldn’t even go up and down stairs. Two: I could actually feel my posterior chain working during this hike. Huge accomplishment for me to move properly and be able to sense it. Three: My pelvic floor held like a goddamn champ. My youngest and I ran for several hundred meters a few different times on our way back to the trailhead, and not a single drop of pee leaked out of me. A true Christmas miracle.
I’m really glad that my kids and I were able to get this hike in. It was SO FUCKING HOT for most of their month with me. So hot that it wasn’t enjoyable (or safe) to be outside most of the time, which was a big giant bummer for a whole bunch of reasons. I’m hoping to have them out earlier next summer, before the weather ruins the experience of being outside. Fingers crossed that the climate disaster we’re living through doesn’t start accelerating faster than it has in recent years.
From the time I started CrossFit in January 2013 until 2021, it was my primary sport. I took 2021 off from CrossFit to focus solely on weightlifting. The idea was to get stronger in the Olympic lifts, which I’ve always struggle to get stronger in, so I could be closer to competing RX in CrossFit. When I started physical therapy earlier this year my plan was to return to CrossFit once my body was healthy and make a go at competing RX.
I’ve changed my mind.
Plot twist! Whiplash! Parkour!
I’ve decided to stick with weightlifting as my primary sport, and to do CrossFit-ish workouts on the side—for fun, not for super serious. There are several reasons I made this decision. A big one is: I think weightlifting is better suited to my brain and my body, and the way that the two do (and don’t) work together. Said another way: I think weightlifting better positions me to (1) keep my body healthy (no, CrossFit injury rates are not higher than injury rates in other strength sports) and (2) be competitive.
My body isn’t quite where it needs to be to jump back into weightlifting full time. I’m still not cleared to snatch or jerk (which is, like, 2/3 of weightlifting), and I can’t yet do pull-ups or push-ups (which are important accessory (successory!) exercises). I *am* cleared to do a bunch of other shit though. All varieties of squats and deads are okay; most types of lunges are okay; and cleans, presses, neutral-grip overhead work (dumbbell thrusters, devil’s presses, etc.), core work, and a ton of accessory movements are okay, too. Running, biking, and rowing have been back in the mix for a few months already.
Microdose my way back into weightlifting—in two simple steps.
Step one: Supplement my 1:1 sessions with one or two barbell training days per week for a few weeks, beginning in mid-August. (Since May, I’ve been working 1:1 with a gymnastics coach two times a week. Our training reinforces and builds upon what I do in PT, and works to improve my aerobic capacity, and endurance.)
Step two: Phase in additional barbell training days until I’m at four a week while phasing out PT and 1:1 training.
How much overlap there’ll be between weightlifting, PT, and 1:1 training will depend on how quickly my body heals. Could be a few weeks, could be a few (more) months. Don’t know. I think we’re close.
About five weeks ago my physical therapist estimated I’d be able to start snatching and jerking in about eight to 10 weeks. We’re halfway through those 10 weeks. Some days it feels like we’re so fucking close. Other days it feels unlikely or even impossible that we’ll get there. We’ve made a ton of progress since I started this round of PT in March, and it feels like we’ve been stuck at this last little bit FOREVER. Historically, being patient has not been a strength of mine. I’m working really hard to change that, and I think I’ve done a good job.
Some good news is: I’ve accidentally been prepping my body for more over the last few weeks. Oops! Pre-injury, I was training 3-4 days a week, for two or more hours per training session. Pre-2021, when CrossFit was my primary sport, I was training 6 days a week, for two or more hours per training sessions, and sometimes twice in a day. Since May of this year, I’ve been in the gym only two days a week, one hour per session.
Until the last few weeks.
My kids have been with me for the last month, and my youngest has been very enthusiastically attending the CrossFit Teens class almost every day that they offer it (four days a week). So, for the last few weeks, I’ve been at the gym three or four days a week, not just my usual two. I’ve been using those extra days to get in some active recovery—mostly different intervals of backward sled drags + C2 bike, and running + rowing—between and around my 1:1 sessions and physical therapy.
Some more good news is: I met one of the weightlifting coaches on one of these extra days—A WOMAN!!! (I’ve only ever had men for coaches)—and we got on really well. We talked about my specific challenges as an autistic athlete, my goals, and the plan I’ve outlined in this post. She was kind, welcoming, passionate, and accepting of me, an autistic athlete (the entire coaching staff at the gym I’ve been training at since May has been incredibly accommodating and accepting, and receptive to learning from me and with me). I’m excited to start working with her and the rest of the team. I AM VERY EXCITED TO GET A BARBELL BACK IN MY HANDS AND OVER MY HEAD, Y’ALL!!!
Before we break that figure down, I want to preface the rest of this post: I’ve spent weeks thinking about whether or not I should (“should”) publish this post.
Part of me feels like I’m not allowed to talk about these things. Or, like. That it’s a bad look to talk about these things, by virtue of being in a position to have such things to talk about. I don’t want to come off as tone-deaf, or pretentious.
Another part of me feels a duty—and wants—to talk about these things. I know and understand that it’s a privilege to have the resources—financial and otherwise—to prioritize my health, and to package all this up to share with y’all. I know this because I’ve not always been in this position. I grew up in poverty, I’ve been on welfare, I’ve been under- and unemployed—and uninsured—for long stretches of time, I’ve been deeply in debt, I’ve been vehicle-less, I’ve been homeless.
I wish more people were more open and honest about this shit—about the enormous amount of privilege and resources, both tangible and in-, that go into (1) “being healthy” (so many ways to define that), and (2) being an athlete, even at an amateur or recreational level. So, I’m being open and honest about what goes into those things for me. You know. Be the change, etc.
In the first six months of this year, I spent $6,080.71 on treatments, services, and products directly related to my injuries and other body-based training limitations, and the issues, imbalances, and weaknesses that caused them. These expenses were not incurred or distributed evenly throughout the first six months of the year. Because I’m bad at numbers/math (I’m not that type of autistic), let’s pretend they were. Divided evenly over six months, that $6,080.71 is basically $1,000.00 a month.
A thousand dollars a month is a lot of fucking money—in general, and especially in the context of anything that isn’t, like, rent or a mortgage (although I’m not sure where you can find $1,000.00-a-month rent or mortgages these days??). It’s also only a fraction of the amount that everything enumerated below actually costs. Altogether, everything below totals $19,509.05, which: JESUS CHRIST. I’m not even THAT injured!!! And the injuries that I do have aren’t even THAT bad!!!
Here’s the tl;dr of it:
Category Total cost (Jan-Jun) Percent of total cost Covered by insurance Out-of-pocket cost (Jan-Jun) Health insurance $280.80 1.5% $0 $280.80 Physical therapy $14,456.60 74.1% $13,428.34 $1,028.26 Mobility and tissue work $2,640.96 13.5% $0 $2,640.96 Gym, etc. 1,696.42 8.7% $0 $1,696.42 Supplements $294.92 1.5% $0 $294.92 Equipment $139.95 0.7% $0 $139.95 Total $19,509.05 100% $13,428.34 $6,080.71
A few notes before we dive into the numbers:
- All figures that follow are exact. No rounding or guesstimating. (Percentages are rounded in the table above.)
- This list includes things that I use regularly, things that I use only occasionally or minimally, and things that I haven’t used at all (or haven’t needed/been able to use yet).
- Many of the things listed below have been and continue to be necessary for my rehab and recovery. Some have/are not.
- When applicable, taxes and shipping are included in the figures below.
- Some figures below reflect vendor promos, some reflect a military discount.
- This list does not include money I’ve spent on other training-related things that aren’t directly related to my injuries and rehab, like training gear, my full supplement stack, food, tech, hiking gear, and tangential expenses, like gas and parking.
- This list includes only the financial investment I’ve made in my rehab and recovery during the first six months of the year. It does not reflect the other resources required to focus on getting my body healthy for training, including time, energy, executive functioning, and a regulated nervous system.
- All of my accounts are current, and I paid cash (“cash”) for everything listed below (nothing was financed).
Okay. Without further autistic ado*, a breakdown of how much my injuries, etc., cost me the first six months of the year.
Health insurance: $280.20
Until I get my orders separating me from service, my health insurance is through Tricare, the military’s health insurance program.
Tricare doesn’t cover a handful of things that some civilian health insurance programs cover, like chiropractic care, massage, acupuncture, or somatic therapy (and it didn’t cover my clinical autism evaluation and diagnosis process, which cost me $5,500.00 out of pocket last fall). Tricare does cover a shit-ton of other stuff, has no limits on physical therapy (a godsend for me, a person who’s been in physical therapy two to three times a week for over a year), and the out-of-pocket costs are unbeatable. Especially in this trash-ass economy.
I know that having this level of coverage and this low of out-of-pocket costs is an immense privilege, and I’m grateful that I’ve had Tricare throughout all of this. I wouldn’t have been able to prioritize these elements of my health without it. It’s also true that prioritizing my physical health—which I’m only able to do because of the insurance I have, which is only available to me because I’m enlisted in the military—has often been at the expense of my mental and emotional health by virtue of being in the military. I’m sure some autistic folks thrive in the military. I’m not one of them.
I wish the level of coverage (or more) and out-of-pocket cost (or less) that’s (currently) available to me was available to everyone, regardless of preexisting conditions (“preexisting conditions”) and employment status. I will absolutely miss having Tricare when the time comes (RIP).
- Monthly premium: $46.70
- Deductible: $0.00
- Copay: $0.00
- Total out-of-pocket cost: $280.20
Physical therapy: $1,028.26
- 3 images (2 X-rays, 1 MRI)
- Total billed: $2,545.60
- Total out-of-pocket cost: $112.00
Shoulder and glute + hamstring physical therapy
- 21 visits
- Total billed: $5,804.00
- Total out-of-pocket cost: $406.26
Pelvic floor + core physical therapy
- 17 visits
- Total billed: $5,957.00
- Total out-of-pocket cost: $360.00
One-off physical therapy consult
- 1 visit, not covered by insurance
- Total billed: $150.00
- Total out-of-pocket cost: $150.00
Mobility and tissue work: $2,640.96
- 12 visits, not covered by insurance
- Total billed: $1,620.00
- Gratuity: $600.00
- Total out-of-pocket cost: $2,220.00
- 4 visits, not covered by insurance
- Total billed: $375.00
- Total out-of-pocket cost: $375.00
- GOWOD app, $11.99/month, 3 months: $35.97
- Stretch app, $9.99/month, 1 month: $9.99
- Total out-of-pocket cost: $45.96
Gym memberships, programming, and 1:1 coaching: $1,696.42
None of my gym memberships or programming and coaching expenses are covered by health insurance or any employer-sponsored wellness incentive programs. All costs are out-of-pocket.
- Temporary membership: $80.00
- Drop-in fees: $30.00
- Total out-of-pocket cost: $110.00
- The Fit Wiz Method, 8-week block, $79.20
- Street Parking, $54.00/3 months, 2 3-month packages, $108.00
- ATG program, one-time promo for one month of access, $20.22
- Total out-of-pocket cost: $207.42
- 10 one-hour sessions per package
- 2 10-session packages
- Total out-of-pocket cost: $1,379.00
- Turmeric and curcumin: $82.67
- Collagen: $175.13
- Fish oil: $37.12
- Total out-of-pocket cost: $294.92
- Slant Board: $139.95
- Total out-of-pocket cost: $139.95
*I hereby declare “autistic ado” shorthand for “the autistic tendency (trauma response) to over-explain every-goddamn-thing in an effort to provide clarity and prevent confusion, even though doing so usually ends up confusing, not clarifying, especially when non-autistics are involved in the communication exchange.”
Now that the weather’s nicer, most evenings I’ve been taking stupid little walks for my stupid mental health through my neighborhood and others nearby. Can you believe this shit hole?
JUST KIDDING THIS PLACE IS GORGEOUS!!!
I!!! mean!!! Look at these Secret Garden-ass vibes! They’re like a dream. Or a French landscape painting. Which: same fucking thing!!! Exquisite. Delicious. I can’t believe I live here???????? (I don’t live in one of these gorgeous houses with a gorgeous yard. I live a few blocks away, in a century-old apartment with terrible curb appeal and that’s literally falling apart at its seams.)
I am endlessly impressed by the organized chaos of these English garden yards. So lush. So diverse. The colors and textures and shapes and height and depth—a giant shot of happy hormones straight to my brain.
How much do you think yards like this cost to get going and then maintain? The houses in these neighborhood are (each) valued at more than a small nation’s GDP. The yards? I’m going with: All of our salaries combined.
Can we please take several minutes to talk about how the colors of nature on the west coast are unrivaled. Borderline unreal. LOOK AT HOW PRETTY! Everything’s so vibrant and saturated. The rest of the country looks perpetually jaundiced in comparison.
This is the time of year that I usually spend a lot of time training outside. Not this year. I’m still too injured. I’m still limited to two hours in the gym per week (down from three or more hours per day, five to six days per week). And I’m still pretty limited in what I can do during those two hours in the gym.
These stupid little walks help offset my ~thoughts and feelings~ about that. Plus, they get my body moving, and they get me out of my apartment and into the world—without having to socialize or spend money or increase my risk of catching COVID, which: bonus, bonus, bonus.
My two youngest kids are coming to stay with me for the rest of the summer—we fly back to Portland from DC today—and, cue the cheese and cringe and cliché, I cannot wait to share this place, and these walks, with them.
A week after meeting a new friend at the start of the Angel’s Rest out-and-back, we attempted to hike the Elk Mountain/King’s Mountain Loop together. This trail is an 11.6-mile hike out near the Oregon coast, in Tillamook State Forest, about an hour west of Portland.
You can start the loop at either the Elk Mountain Trailhead or the King’s Mountain Trailhead, and hike it in either direction—clockwise or counter-. We started at the Elk Mountain Trailhead, and, in the millennial tradition of taking the advice of internet strangers, hiked it counterclockwise.
While we started at the Elk Mountain Trailhead, we accidentally took a different trail. What had happened was, I didn’t read the sign closely enough and confidently directed us onto the wrong trail—Elk Creek instead of Elk Mountain. OOPS.
Neither of us realized until a few miles—yes miles, not minutes—in, when we hit the sign in the photo below and were unsure which way to go. Obviously the sign says to go left. When we checked our location on AllTrails, it didn’t match up and we were confused, okay!!! It took us a few minutes to realize we weren’t on the trail we thought we were on. We were on a Forest Service road instead. 🤡
We went left, and, just as the sign predicted, hit King’s Mountain Trail about a mile later. This spot is actually a juncture where Elk Creek, Elk Mountain, and King’s Mountain trails meet.
We hung out here for a few minutes, oohing and ahhing over the cutie baby wildflowers, and the view.
It was a chilly, overcast morning, but the views were still incredible. My iPhone camera really doesn’t do it justice. And it’s difficult to get a sense through the photos for how intense the drop-off felt in person. In the photo below I think the trees make it look like it might be a graded decline. In reality, it was…not. The first photo in this post was taken at the same spot, and offers a more accurate perspective, imo.
Going in, we knew this hike was going to be “hard.” The problem is, there’s no real way to easily discern what “hard” (or “easy” or “moderate”) actually means on AllTrails. Is it “hard” because it’s a long distance? Has technical terrain? A steep grade? Exposed trail? Some of those things? All of those things? A mystery.
We read through a number of comments before attempting this one, so we knew to expect some scramble and some steep trail. We were *not* surprised when we hit the portion of the trail that has a secured rope to help you down (or up, if you hike it the other way). Looking down:
And looking up (this photo gives a better idea of the steepness/grade):
We *were* surprised to encounter the degree of steepness and exposure we did just before and after “the rope.” (In hiking, “exposure” is defined as “precipitous drops of anywhere from 30 feet to over 300 feet or more…“) I, for one, was not prepared.
I don’t have any photos to share from these portions of the trail—the trail was too narrow and the drop-off too steep for me to even think about fucking around with my phone. I spent most of these parts of the trail with three points of contact at all times.
As if on cue, right as we hit what we felt were the hardest parts of the trail, the fog rolled in and visibility dropped, and the rain started coming down, making the near-vertical scramble incredibly slippery and the very narrow and very exposed trail very muddy. Ultimately, we decided to turn back just before King’s summit. I’ve more to say about this in a separate post.
When we got back to the juncture of Elk Creek, Elk Mountain, and King’s Mountain trails, we thought about taking the correct one—Elk Mountain—back to the trailhead. But because (1) our nerves and confidence had just been tested on tough-to-us terrain in less-than-ideal weather conditions, and (2) our navigation skills are obviously shit (lol, brb adding “skills include getting lost while hiking” to my Tinder), we decided to go back the way we came (Elk Creek/the Forest Service road). It added distance and time, but it was a familiar route with familiar terrain and felt like the safer and smarter option.
I bought a new pack and trekking poles for this hike. The pack is an Osprey Jet 18. I liked it well enough. Tbh, I wanted a different pack (don’t remember which now, I think a Gregory day pack) but this one was the only option that came in a bright color, and something inside me said that having a brightly colored pack could come in handy one day, considering I often hike alone and, as my last couple of hiking-related posts have established, I’m particularly skilled at taking the wrong trail/getting lost-ish (we all have to be good at something!).
After Dog Mountain, I decided to invest in trekking poles. Given my cranky and janky knees, they seemed like a good move, especially for steep descents. I bought the Wilderness Technology Carbon Tri-Fold Trekking Poles ($100). They’re kind of pricey, but they collapse down enough to fit in the side of my pack without falling out or hitting me in the leg or the head every other step.
They’re fine. They do the job they’re supposed to do. I just…don’t like using trekking poles, turns out. You live and you learn. ¯\_(ツ)_/¯
Overall, this was an okay hike. Not my favorite, and not my least favorite. I found it to be more mentally/psychologically challenging than physically challenging (I thought Dog Mountain was more physically challenging). To be fair, though, I might feel differently had we taken the correct trail, and/or if we finished the loop.
Would I attempt this one again? In drier and warmer weather, and with a hiker who’s had experience with this specific trail *and* other technical and exposed trails, probably.
Our stats: 12.0 miles, 2,929′ of elevation gain, 5h 26m.
A few more details:
Permit: None required.
Trailhead: There are multiple places to begin this hike. We started it at Elk Creek Campground.
Bathrooms: One porta potty at the second (larger/upper) trailhead lot, two vault toilets (non-flushing outhouse) at the campground.
Parking: Two lots, both just past the campground parking lot. The first/lower lot is on the right. Drive past it and you’ll drive into the larger/upper lot.
Cell service: Mostly none. I have Verizon and I lost service just past the Shell station on Route 6/Wilson River Highway. Heading west on 6, the Shell is on your left, just after a pond, which is also on the left. I had no service for most of the hike. I briefly regained service just before we reached the rope, and lost it again almost immediately.
Because of the lack of cell service, and the exposure and terrain, I suggest not hiking this one alone if you’re not an expert hiker, especially in inclement weather and/or with limited visibility.
Water source: If you take Elk Creek Trail and go counterclockwise, you’re parallel to the river for a bit in the beginning (and again at the end if you turn around and go back the way you came instead of finishing the loop). Probably best to bring your own.
Summit: There are two along this loop, and we missed them both! Oops! I imagine the views are amazing though, because the few we got at lower elevation along the way were.
Dogs: Lol, no? I wouldn’t call this one kid-friendly, either.
A Twitter thread, an essay, and a few non-fiction books about disability, health, and trauma.
First up, the short-form stuff.
There’s this Twitter thread about why many autistic people don’t watch (or otherwise support) Netflix’s exploitative and stigmatizing show Love on the Spectrum. The replies and quote tweets are amazing, too.
There’s also this excellent essay about the casual ableism in cooking from Gabrielle Drolet, a disabled journalist, essayist, and cartoonist. The main takeaway: Items that many people turn their nose up at and consider to be lesser-than or “lazy”—like jarred minced garlic, bottled lemon juice, pre-sliced produce, and shredded cheese—are accessibility tools for disabled folks who can’t do things like chop or peel or slice.
Alright. Onto the books!
Disability Visibility: First-Person Stories from the Twenty-first Century edited by Alice Wong.
This is the first non-autism disability-related book I picked up, and I’m very slowly making my way through it. It is, as the title suggests, an anthology of essays by disabled folks, about what life is like as a disabled person in a very ableist society.
This book has been uncomfortable to read, and for those us with deeply internalized ableist attitudes, assumptions, beliefs, and behaviors (like yours truly), I think that that’s the point.
Of the essays I’ve read so far, “The Isolation of Being Deaf in Prison” by Jeremy Woody as told to Christie Thompson is the one that has stood out to me the most. You can read the full essay on The Marshall Project’s website.
Related to that essay: A book I read a few years ago, Insane: America’s Criminal Treatment of Mental Health by Alisa Roth, and a recent episode of the podcast Crime Show, which reports the story of a prisoner without teeth who was unable to eat yet denied dentures by the prison system because they only provide dentures if/when medically necessary and needing to eat was not considered medically necessary. Make it make sense!
What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Woo.
The cover and the subtitle sold me—I’m a sucker for a well-designed book cover, and relatable memoir. So, a book with a gorgeous cover about a terrible thing? A real twofer, folks. Who could resist!
This book is exactly what the subtitle says it is, and the first of its kind: a memoir about healing from cPTSD. Specifically, childhood abuse and neglect, with a touch of generational trauma, and the science behind it, thrown in.
It’s a little slow to unfold for my taste, and I found it to be a little disjointed in places. Not sure if that’s a scoping issue or an editing issue. Maybe both. Whatever the case, I think this book is important and my own traumatized lil heart appreciates that more people are speaking so openly about trauma, abuse, therapy, and the hard work of healing.
A word of warning: There are some pretty detailed accounts of the author’s experiences that will be activating/triggering for some people. Reader discretion advised.
Another related-ish memoir: Carmen Maria Machado’s In the Dream House, a lyrical memoir about domestic violence in a queer relationship.
The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke.
I’ve still got about 100 pages left but WOW. Very hard to put this one down, which I unfortunately have to do during the workday??? Dizazz.
Anyway. This book is well-researched, well-structured, and beautifully written. A great example of memoir combined with research and reportage. (In this way, it reminds me of another extremely bangin’ book: Leslie Jamison’s The Recovering: Intoxication and Its Aftermath, her memoir + cultural history + literary criticism + reportage about addiction and recovery.)
Like Disability Visibility, this books been uncomfortable to read. Because like Disability Visibility, this book has me confronting my own ableist attitudes, assumptions, beliefs, and behaviors. It’s uncomfortable to confront shitty parts of yourself!
This book is also affirming to read, because it does a great job of capturing the experience of having an invisible disability—of what it’s like when what people see on the outside doesn’t match what you feel on the inside; of knowing something about you is…off (“wrong” in the case of chronic illness, “different” in the case of autism), and no one around you understanding or believing you.
To be clear, autism is not an illness/disease. It is an invisible disability. This book is about being chronically ill, not about being autistic. Chronic illness and autism are related, however, in that they’re both largely invisible disabilities, and the descriptions in this book of those feelings of invisibility are very, very relatable to me, an autistic person.
Also, I was delighted—yes, delighted—that O’Rourke quotes/references a few of my favorite contemporary writers—Eula Biss, Sarah Manguso, and Jenny Ofill. I was also delighted to see that Biss and Esmé Weijun Wang (whose essay collection The Collected Schizophrenias I recommended at the very bottom of my post about the memoir-reportage book Pathological: The True Story of Six Misdiagnoses) blurbed this book. I clearly have a type when it comes to writers and writing.
What are you reading?