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:
Percent of total cost
Covered by insurance
Mobility and tissue work
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).
*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.”
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):
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.
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.
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.
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.
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.
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 isan 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.
Every time I encounter the phrase #TrustTheProcess, I want to fucking SCREAM (yes, I wanted to scream the entire time I wrote this post). Being an athlete, I see and hear it all. the. time. It’s everywhere, its 7.5+ million posts propping up the fitstasphere by fitfluencers and big-name, top athletes alike.
I get why people use it. I know that, ostensibly, it’s meant to be motivating, encouraging, empowering. To amp people up. Get them excited. To instill in them dedication, discipline, drive. I understand the appeal.
In practice, this phrase is an overused and mis-used ableist pile of shit.
The people who preach #TrustTheProcess often fail to consider the resources—especially the intangible ones—and the nuance that go into accessing “the process” in the first place, let alone adhering to and trusting it. They conceive of “the process” as a universally applicable and infallible monolith. If you stick to it, it’ll work. If it doesn’t work, you’re not doing it right. Or you don’t want it badly enough. In the face of failure, the process is never the problem. Only you, the person, are ever the problem.
Here’s the thing about #TrustTheProcess: “The process” is not fail-proof, one-dimensional, or one-size-fits-all, and for it to work, you have to trust a lot more than just the process itself.
It isn’t enough to just show up and put in the work and follow—and stick to—the program. #TrustingTheProcess requires us to also trust our body, which requires us to know our body—and our needs and our boundaries—and to trust our intuition; to trust that the process we’ve been prescribed is designed for our body, that it’s compatible with our boundaries and our needs; and to trust the people around us who are telling us to #TrustTheProcess in the first place—coaches, trainers, doctors, physical therapists, etc.
For many of us autistic folks, these are incredibly difficult tasks. Sometimes they feel impossible. Sometimes they are impossible. Especially in a society that seems hellbent on forcing one-size-fits-all approaches that are baselined for neurotypical brains and bodies, espousing toxic positivity and hyper-individualism, and misunderstanding and pathologizing natural variations of the human experience.
Many of us autistic folks, especially those of us who learned we’re autistic later in life, grew up being told by everyone around us that our experiences, especially our sensory experiences, weren’t valid or real. We were called dramatic and attention-seeking. Our attempts to communicate our experiences and our needs were taken as complaining, or even combative, and often went unheeded. Sometimes we were punished—socially, emotionally, physically—for trying to make our experiences and needs known. Often, this shit persists into adulthood, and even after we learn—and disclose—that we’re autistic.
Since I started lifting almost a decade ago, I’ve consistently told coaches and doctors “this doesn’t feel right” and “that doesn’t make sense to me” and “I don’t think I’m doing this right??????”
For years, I was made to feel like I was stupid, that I was being lazy, that I didn’t want it badly enough, that I was being willfully obstinate. For years, coaches—and your standard variety pack of healthcare providers: doctors, DPTs, LMTs, chiros, etc.—insisted that it was impossible for me to experience the things I was experiencing, that I must be mistaken, that it was all in my head.
At first, I pushed back. I switched gyms, changed coaches and doctors, asked for second and third opinions, googled the shit out of many corners of the internet. Everywhere I went, I was told by people with all the right qualifications and credentials and letters behind their names that I was wrong. I was dismissed, disbelieved, gaslight. Told no, I was not having the experiences I was having. Impossible. The problem was me. I needed to #TrustTheProcess.
So I did. I spent hundreds and hundreds of dollars, and tens and tens of hours each month on #TrustingTheProcess. Day after day I showed up and put in the work. I paid for custom programming and coaching, I paid for nutrition coaching, I meticulously tracked my macros, my hydration, my sleep, my periods, my moods, my energy levels, and a long list of other variables. I recorded my training sessions, and analyzed them to death. I planned my entire life around lifting. For almost a decade I did this, with very, very little return on investment.
After the initial wave of PRs that most newbies ride, I plateaued. Hard. I wasn’t getting better, or stronger. Eventually, I started to regress, and to get weaker. And then, I ended up where I am now—multiply injured and, due to compensatory movement patterns that my body developed in response to performing movements incorrectly for literally my entire life, with “profound” (a current doctor’s word) muscle weaknesses and imbalances, on top of my natural hypermobility and joint instability. (Autistic people are at significantly higher risk for hypermobility, connective tissue disorders, and joint injuries.)
TURNS OUT *cuts eyes at camera* I was right all those times that I told my coaches and clinicians “this doesn’t feel right” and “that doesn’t make sense to me” and “I don’t think I’m doing this right??????”
Being autistic means my brain processes information—like coaching cues—differently, and my sensory systems—including the systems responsible for balance and coordination, muscle activation and recruitment, motor planning and output, awareness of where my body is in space, and sensing pain—work differently.
All those years, I suspected that my brain and my body worked differently. But I had no proof, so no one listened to me. I didn’t know the truth of my intuition—an intuition that was questioned and dismissed so frequently and intensely by experts and professionals that I gave up on it, began to ignore it—until recently. I didn’t know the truth of my intuition until I learned that I’m autistic and began learning how being autistic impacts me as an athlete, and overall health and wellness.
Most of the people I’ve worked with in the past didn’t know it either. I don’t think any of them were actively out to sabotage me. I think that they just…didn’t listen to me—and weren’t willing, or were otherwise unprepared, to consider that my experiences and needs are different from most, and to accommodate them/me. And before I learned that I’m autistic, I didn’t have the context or language to more effectively communicate my experiences and needs; to get people to listen to me, to believe me.
Autism aside, it’s wild to me that I was treated the way that I was, by so many people and for so long. Athlete/coach and patient/doctor relationships are supposed to be collaborative, not authoritarian. We should be working together to create spaces where we both feel respected and trusted, and able to trust each other.
It’s really, really hard to #TrustTheProcess when you don’t trust the people who are telling you to #TrustTheProcess, because the people who are telling you to #TrustTheProcess don’t trust you when you communicate your experiences and your needs to them.
We’re all different. “The process” is designed for many, perhaps even most. But “many” and “most” are not “all.” Some of us need a different process. And that’s okay! “Different” doesn’t mean “less than” or “worse” or “wrong.” It means “different.”
Coaches and clinicians: Be someone we can trust. When we tell you what we’re experiencing and what we need, believe us. Trust us. Work with us to find an approach—a process—that works for us, instead of doubling down and shrugging us off. We aren’t lazy or complaining or inherently inept or incapable; we’re frustrated and traumatized and exhausted. We absolutely want it badly enough. We just need someone to take us seriously, and give us a chance. I promise you, we’ll be much more open to trusting you and the process you prescribe if we feel seen and supported.
And if what we need is outside the scope of the service you offer, or beyond your knowledge and experience, say so! “I don’t know” is not a sign of weakness or an admission of failure.
Before we dive in: I recognize that mental health and mental illness are emotionally charged topics, and, in our society, politically charged ones, too. I also recognize that they’re complex topics. There is no one-size-fits-all approach or philosophy. I think there’s widespread consensus that we need a paradigm shift when it comes to mental health and mental illness, and many different ideas about what that shift should be and how that shift should happen.
I don’t have all the answers. Or any of them! I have my thoughts and my feelings and my opinions, which are informed by my experiences, which are informed by my unique combination of privileges, accesses, and opportunities. Some people will share my perspective, and some people will not. That’s okay!
There are many bits in this book that I think are informative and valuable, and there are some takes with which I disagree. I touch on a few of these takes below, and focus mostly on one.
Alright then. Shall we? Let’s shall.
Ostensibly, this book is a memoir about the author’s experience of being misdiagnosed over the years with six separate DSM diagnoses: anorexia, major depressive disorder, anxiety disorder, ADHD, OCD, and bipolar disorder.
This book is memoir in the loosest sense of the word. The author frequently references her personal experience, but there’s no introspection, reflection, nuance, or critical self-analysis that one expects from memoir, and no character development beyond the superficial (really, the only character “development” is the author ages, as one does in accordance with the linear progression of time). The author comes off as self-centered—not self-aware—in a way that’s frustrating (sometimes infuriating) and uncomfortable.
What this book actually is, is a history and critique—a rebuke, really—of the DSM. Many people know that the DSM, or the Diagnostic and Statistical Manual, is psychiatry’s “bible” and what clinicians use to diagnose mental illness. What many people don’t know, and what Pathological discusses, is that while the DSM has been branded as a definitive and scientifically sound document, it’s not. It has a problematic history, and remains a problematic—and scientifically unsound—document.
The main argument of the book is: Stop pathologizing normal human behavior, activities, and experiences. Which: YES! I agree with this. Emphatically. I understand that the DSM has a problematic history, and I agree that it remains a problematic document. I agree that there needs to be a paradigm shift when it comes to how we think and talk about, and approach, mental health and mental illness.
Where the author loses me is making the leap from “the DSM is a problematic document” to “not a single diagnosis in the DSM is real and its diagnoses aren’t helpful.”
She makes this leap by staying stuck on only the scientific definition of the word “valid.” To Fay, all DSM diagnoses—with the exception of dementia and perhaps schizophrenia (her caveats)—are “hypothetical” and “opinions, not facts.”
I think that this is an extremely problematic take.
Using the scientific definition of “valid,” DSM diagnoses aren’t “real” in that they aren’t pathological. Meaning, Fay clarifies, they’re not medical disease or illness; there is no blood test or brain scan or other physical diagnostic exam that can conclusively diagnose anything in the DSM (with the author’s two caveats, noted above).
Okay. I understand that using this definition of “valid,” no DSM diagnosis is “valid” because no DSM diagnosis is pathological. And, per a previous paragraph, I agree that we should’t pathologize normal human behaviors, activities, and experiences. I don’t agree that an experience not being pathological means that it’s not real. And I don’t agree that grouping experiences using common language is unhelpful.
An experience does not need to be observable on a physical diagnostic exam to be “real” or “valid” in the non-scientific meanings of those words. These experiences are very real for the people having them, and they have an impact—often a significant, if not defining, one—on a person’s life. And in this ableist-ass economy, that impact is usually a negative one.
Let’s take autism as an example. I’m autistic. Or, using the pathologized language of the DSM, I have Autistic Spectrum Disorder (autism isn’t a disorder or a deficiency, it’s a difference). There’s no blood test or brain scan—or other diagnostic imaging or lab—that can conclusively confirm, or “diagnose,” autism. Because being autistic isn’t an illness or disease. It’s not pathological. That autism can’t be definitely measured by and irrefutably proven using a physical diagnostic exam doesn’t mean my experience of being autistic isn’t valid or real. Same goes for the other DSM diagnoses. To argue otherwise is hurtful and harmful. That’s called gaslighting. Gaslighting is abuse. Abuse can cause trauma.
DSM diagnoses are labels. Sometimes, labels can be limiting. Often, especially in the context of understanding who you are, and extra especially in the context of invisible and intangible aspects of identity, they’re incredibly useful. Spend some time scrolling through #ActuallyAutistic, #DisabilityTwitter, and #NEISVoid on Twitter and you’ll see how powerful having language for your experience can be.
Pathologization aside, DSM diagnoses are life-changing, even life-saving, for many because those diagnoses—those labels—give people language, context, community, and permission. Receiving my DSM diagnoses was the single-most affirming and empowering experience of my life (to date, and pathologization aside). They came with stigma and stereotype, sure. They also gave me the four things I mentioned above: language, context, community, and permission.
Language to describe my experiences.
Context for why I have the experiences that I have.
Community with other people who have similar or same experiences.
Permission to stop masking, to unlearn ableist attitudes, to cut myself a fucking break, to be me.
Doing away with—or refusing/rejecting—DSM diagnoses, as the author suggests, and indeed does herself, means doing away with those labels and the affirming and empowering—and sometimes life-saving—benefits they can offer.
Also, can we just take a moment to talk about the irony of the author writing an entire-ass book arguing that we should stop pathologizing normal human behavior, activities, and experiences, and then using outdated and pathologizing language throughout. LOL!
Not once did Fay make an effort to reframe pathologizing terms with less loaded and more neutral, understanding, and inclusive language. She doesn’t even address it in passing. It’s like the idea simply never occurred to her. Wild.
Reframing pathologizing language is easy. SO easy.
We can say “co-occurs” instead of “comorbidity.”
We can say “traits” or “experiences” instead of “symptoms.”
We can say “difference” instead of “deficiency.”
People can be “supported” and “accommodated” instead of “treated” or “managed.”
Fay knows language is important. She must. Her whole book is framed using punctuation as a device to illustrate exactly this. If punctuation matters, so too must the words it punctuates. And the author—A WRITER, AKA A PERSON WHOSE WHOLE ENTIRE JOB IS LANGUAGE—obviously understands this. That she neglects to acknowledge or elaborate on it is, in my personal, unsolicited, and correct opinion: deeply irresponsible.
If your goal is to stop pathologizing non-pathological things, one of the easiest and immediate ways you can help to do this is to change the language you use when writing about said things. It’s, like, incredibly fucking obvious that using pathologizing language to talk about non-pathological experiences…perpetuates the pathologization of said non-patohlogical experiences, no?
It’s also wild/frustrating to me that Fay fails to discuss—or even acknowledge—one: that health is holistic and intersectional, and two: the ways society and our environment can intersect with and impact our health. We can’t talk about mental health without also talking about other aspects of health, like physical and emotional health. Nor can we talk about any aspect of health without acknowledging that every aspect of our existence influences every aspect of our health.
To her credit, Fay does mention the medical model of mental illness. To her discredit, she does so only once—in passing and with no explanation or elaboration, 213 pages in—and she doesn’t mention or explain the social model of mental illness at all.
To her credit, Fay does discuss the Big Pharma aspect of the Mental Health Industrial Complex. To her discredit, she doesn’t acknowledge or discuss capitalism’s role in mental health beyond that. There’s seemingly no awareness on her part of how our capitalist society contributes to (creates?) and reinforces/perpetuates the mental un-wellness that it pathologizes and then packages and sells to us as being a result of our supposedly inherently faulty brains, without the slightest consideration for the ways the shit-ass social conditions and contexts in which we live and seek care affect our health.
To her credit, Fay does discuss off-labeling and over-prescribing, and the very real problems that too many people with too little education and training are permitted to diagnose using the DSM, and many people doing the diagnosing are misdiagnosing (lots of overlap between those last two things). I don’t think she digs as deeply on these last two things as she could have. There’s a lot of talk that it’s happening, and very little talk about why it might be happening. And certainly no talk about ways we might approach change.
I’m also confused by her suggestion to eliminate spectra, and I don’t think she adequately acknowledges her privilege, or the impact that gender, sexual orientation, race, and/or socioeconomic status in particular have on clinicians’ tendency to pathologize peoples’ behavior and experiences. The few mentions she makes of these things feel very superficial, contrived, and CYA-y.
As I read, I kept waiting for Fay to disclose her “real” diagnosis. Spoiler: That never happened. There is no neat ending. Which: fine. I don’t need a neat ending. I do like a cohesive and coherent one, and I don’t feel like I got that from this book. At the end of the book (literally), what we get from Fay is her rejecting therapy and all her diagnoses. She waits to do this until the epilogue.
“When I stopped labeling and talking to myself as a sick person, I no longer was one,” she writes 250 entire pages in. “I reject a diagnosis because none has been proven, but I have or had a mental illness—broadly and without definition,” she continues two pages later.
I have mixed feelings on this. Part of me feels like this is an extremely privileged decision that gives off very toxic positivity “denial disguised as ‘the power of positive thinking'” energy. Maybe it’s her delivery, though, not her message. Part of me gets it. Over the years I’ve had therapists insist—though not formally diagnose—that I was depressed, and “suffering” from PTSD. I knew in my bones that neither of these diagnoses fit—so I rejected the suggestion, and, eventually, found new therapists (a very privileged move).
I don’t know. To me, Fay sounds angry, perhaps scared and alone, and full of internalized ableism. And I think those things overpower the main message of her book.
(Honestly, I was waiting for Fay to reveal that she’s autistic. Each of the six DSM diagnoses that she outlines in the book either commonly co-occur with autism, or are commonly misdiagnosed before a person learns that they’re autistic. And the way she talks about her life experiences, both past and present, sound like so many other experiences that autistic people describe having.
I cannot stress this enough: Although it’s included in the DSM, autism is not a mental health condition/illness. Autistic people often experience adverse mental health conditions/illness as a result of living in an unaccepting and ableist society, but autism itself is not a mental health condition/illness.
I recognize that the phrase “mental illness” is…pathologizing. As are the words “diagnosis” and “diagnoses.” I also recognize that it’s the language that we have right now, to best convey the significance of many peoples’ experiences.)
Overall, I think the book is worth reading or listening to. While Fay fails to acknowledge or discuss many aspects of her argument that I think are crucial to the conversation she’s trying to have, she does make many excellent points about a few things. The book is well-researched, and the information she provides re: the history and usage of the DSM is especially important and valuable—albeit devoid of critical thinking or meaningful calls for action. Plus, there are things she discusses in the book that I’ve not touched on at all here. Respectfully, you should form your own opinion about the book by reading the book, not this post.
Fay uses punctuation as a device to frame the argument that language (or, I guess, punctuation) matters. It’s an interesting and fun choice. Given my love for language and history, I’m surprised it didn’t work for me.
Two books about the history of punctation that I’ve read and love and enthusiastically recommend to my fellow word nerds:
The day after I hiked Dog Mountain (three entire weeks ago???? what is time?), I hiked Angel’s Rest. Angel’s Rest is another hike in the Gorge, on the Oregon side. It’s a short and easy trail—only 5-ish miles out and back, and just under 1,500 feet of elevation gain.
My original plan was to hike the 10-mile Angel’s Rest to Devil’s Rest Loop, but what had happened was, one of my heels began to blister shortly before the summit. Because this hike was so short, I didn’t wear liners or bring moleskin (dumb). I knew I was hiking again the next weekend and didn’t want my heel to be raw, so when I felt it blistering I decided to cut it short and just do the out-and-back. Look at me, adapting in the moment to the consequences of my own dumb decisions. That’s what we call ✨growth✨, bb.
The trail was pretty, and pretty straightforward. No obstacles or danger zones. Well-maintained and wide. The weather was great—clear and crisp—and because I started early (before 7 am), the trail was pretty empty.
I met a fellow hiker a few minutes in, right before the waterfall (Coopey Falls). We offered to take photos of each other, and then finished the hike together—and then made plans to hike together the following weekend. A new fitness friend! Neat!
Shortly before you reach the actual summit, you hit a false summit. There’s plenty of space here to take photos, or eat a snack, or just take a break. And if you hike it early, it’ll (probably) be empty and you’ll (probably) have it all to yourself. I think that the false summit had a similar view as the actual summit, and made for a better photo.
Ten-ish minutes past the false summit, you reach the actual summit and its 360-degree views. My hiking buddy and I almost missed it because we accidentally started on the trail to Devil’s Loop. OOPS. Thank god for AllTrails and its navigation feature. Truly.
Hint: As you leave the false summit, take the trail to the left (toward the river) to summit Angel’s Rest. The trail to the right leads you to the loop. Which: Take that too if you want, after you summit Angel’s Rest. Or not. I don’t know! I’m not the boss of you!
Overall, an okay hike. It wasn’t challenging, which I didn’t like. The views are stunning, which I did like. I’d do this one again, but I’d make it the loop, to add in some distance and, hopefully, some intensity and/or difficulty.
A few other details:
Permit: None required.
Parking: Two lots. I parked in the “lower” lot, pretty immediately off I-84 (if coming from Portland) and right across from the trailhead. I pulled in around 6:45 am and got the last of about ?????? 20-ish spots. There’s an “upper” lot just west of the trailhead, on the left. I didn’t park there or pass by it so I don’t know how big it is. Soz.
Bathrooms: None. Probably a few spots to pee off-trail but, tbh, this was such a short and quick hike that I didn’t pay attention because I wasn’t worried about needing to pee.
Cell phone service: I have Verizon and I had service the whole hike.
Water source: If you want to slip-slide down to the waterfall and you have a filtering system, there’s water along the way. Probably just bring your own though.
Summit: Very pretty near-360-degree views (according to Gorge Friends dot com you get 270-degree views). Not crowded if you go early.
I read this paraphrasing of the Joyce Meyer quote “patience is not simply the ability to wait—it’s how we behave while we’re waiting” years ago. It’s stuck with me, and it’s been especially loud in my mind these last few weeks.
I’ve been feeling restless and frustrated lately. The weather’s nicer, the days are longer, and this is my favorite time of year to spend hours each day training hard and heavy and fast. I can’t do that this year. My body has forced me to scale way the fuck back, and slow way the fuck down.
This has been challenging, mentally and emotionally. I’m not a patient person. Not in the way most people conceptualize patience—as a passive state of waiting.
I don’t like waiting. I don’t like not doing. And when it comes to scaling back and slowing down my training, I have an especially tough time being patient: Training is my zen. It’s the only time that my mind slows and quiets down, and that I can block out the rest of the world. I rely on it to regulate my nervous system and level-set my mental health. Not being able to train at full intensity and full speed has been hard.
Enter: “Patience is what you do while you wait.” I like this take because it frames patience as active and intentional. Bonus points for it aligning with my coach’s “less is more—for now” approach to my current programming.
There’s a lot that I can’t do right now, and there’s a lot that I can. So. I’m doing what I can while I wait.
I’m going to PT.
I’m doing my PT home programs.
I’m regularly receiving soft tissue work, and doing mobility and flexibility work.
I’m working one-on-one with a gymnastics and strength coach twice a week on regressing and mastering the most basic movements, building strength in the right muscles, building body awareness, unlearning deeply ingrained compensatory movement patterns, learning correct movement patterns, developing mind/muscle connections, learning to trust, and building confidence.
I’m tracking different aspects of how my body moves and feels, with more consistency and detail.
I’m prioritizing sleep and recovery, and nutrition.
As frustrating and challenging as it’s been to scale back and slow down, I know that it’s the right move. Necessary, really. Even if I wasn’t injured, I would’ve needed to scale back and slow down in order to learn to move efficiently and correctly. Because even without injuries, my balance, coordination, general body awareness, perception of sensation, mind/muscle connection, and motor planning and output weren’t—and aren’t—where they need to be for what I want to do.
My ability to do the things I’ve outlined in this post is rooted in an immense amount of privilege, access, and opportunity—in general, and as an autistic adult in particular. And extra especially in this dumpster-fire economy o’ the end times.
Rehabbing and prehabbing is a resource-intensive endeavor. It takes a team, and a fuck-ton of time, energy, and money to do *gestures widely* all of this. I am incredibly fortunate to be able to prioritize my health—consistently, and to the degree to which I do—so that I can do my silly little fitnesses for fun. Since learning I’m autistic and working to unlearn ableist attitudes and assumptions (an ongoing process), I am never not hyperaware of this. I wish that more people, especially those in the fitness world, recognized and understood that privilege, access, and opportunity are prerequisites to being—and staying—healthy.
But I digress.
I’ll save my many thoughts and feelings on all that—ableism, privilege, and toxic positivity in fitness—for a future post.