Thinking About Disability Advocacy When Planning End of Life Care


As life is wont to be, things are complicated for me right now. Due to a variety of low key health things, my parents are redoing their wills/power of attorney/etc. and have given my brother and I the gift of having ours done as well.

So here I am, a 27 year old disability advocate, thinking about what I want out of end of life care, and I’m finding that I’m suddenly being asked in a very serious way: do I believe it when I say that I believe people with significant disabilities can live good, worthwhile lives. Do I want to be kept alive with significant brain damage? What about paralysis or physical loss of functioning? My gut says no, but when I stop and think about it, the disability community has told me that those lives are just as valuable as my own. Can I truly internalize that?

Add on top of that that I already manage a chronic condition, that I’m low key suicidal like 99% of the time (I’m fine, it’s a passive thing), and that I’m frankly lukewarm about life overall, and I find myself concerned and confused.

Is it ok for me to think that MY life wouldn’t be great and that I would want to die if I lost any quality of life, while still maintaining that other people in similar situations could have perfectly great quality of life? How does this play into the very real problem of disabled people being killed with the rationale “It’s better for them”? There’s some image that it’s freedom to die if you’re disabled (which was thrown into sharp relief for me this week after Stephen Hawking died and people actually literally said those words, drew comics of them, and implied that it was good he wasn’t suffering anymore).

I’m chewing on a lot of this, and I can’t say that I have answers, but it’s interesting to notice the places where your abstract values require concrete commitment in your own life, and the way that’s completely different. I believe that disabled people can have fulfilling, good lives because they have told me so. But do I trust them enough to say that I’d live that life if something were to happen to me?

Part of the challenge with writing a medical directive is that you’re trying to imagine every contingency. I have no idea what conditions I might be addressing. And when you’re writing the directive, you’re assuming that you would be incapable of making your own decisions, which already assumes that things are pretty nasty. There’s probably a significant difference between the types of things that would cause me to require ongoing medical treatment to stay alive AND would render me incapable of giving my own consent vs. ongoing disability.

I’m currently leaning towards saying that I would prefer minimal effort be made to keep me alive. I have already experienced years of life quality that I will not live through again. I have promised myself that if I ever feel that way for months on end again, I will ensure that it stops, however I can. I live my life protecting myself from potential pain of all kinds. I firmly believe that people have the right to not live anymore, just as they have the right to live.

Does saying “I don’t want that” mean “other people also shouldn’t want that”? Obviously no. Is it different when it’s life and death? Maybe. Does saying “I would rather die than live like that” mean other people shouldn’t do it…maybe not. I can very clearly say that I would rather die than go back to the college I went to. I have nightmares about it regularly. But there are other people who have lived there and been immensely happy.

One of the things that is becoming apparent to me as I speak to more people about disability is that the experience of it is individual. Some people responded to Stephen Hawking’s death by saying “I would kill to be out of my wheelchair”. Others say that their wheelchair is freedom. When you get the choice, or at least a little bit of choice, it makes sense that there isn’t a right or wrong answer, and that the deeply personal choices you make about end of life care aren’t (necessarily) some kind of political statement about the value of life.

But even so, I want to be deeply and carefully aware of how my particular preferences are informed by a culture that says disabled lives aren’t worth living, and I want to question that narrative as often as possible. In some ways I am a coward for knowing that more often than not I cannot tolerate life. But I’m also a realist, and I don’t think it does anyone justice to shy away from the times that life is truly suffering. As always, this is the dichotomy of disability: I am worthy. I am in pain.

Uncovering The Implications of Autism


I’ve been diagnosed with autism for about 2 years now. It feels like a long time to me, the longest any diagnosis has ever felt “right”. It’s long enough that I’ve started to feel like I get all the autism things about myself. For a while after the diagnosis I would regularly have moments of realizing “oh shit that’s autism!” and having pieces fall into place. Each time it happened, it helped me understand myself, navigate when I was struggling, or explain myself better to other people.

But after a while that stops happening as often. You feel like you understand yourself. The diagnosis fits, time to live life. Of course if that were the case I wouldn’t be writing right now, so you know there’s more to the story. A diagnosis like autism is something that you will never stop understanding. You’ll look back at things you did and behaviors you thought everybody did, and realize nope. That’s an autism exclusive.

I’ve had a few of those moments recently, and I want to talk about how hard it can be to realize that autism sometimes makes you an asshole, or affects the people around you in ways you didn’t expect. How do you parse what’s you and what’s the diagnosis? How do you ask for accommodations without expecting people to cater to shitty behavior?

These aren’t new questions, but it’s something that all neurodivergent people have to grapple with over and over as we find new ways that our brains are assholes. Sometimes they’re assholes to us, and sometimes they’re assholes to other people.

Let’s take a recent example for me. I’ve known about the concept of theory of mind for a while, and known that sometimes I struggle with it. But for some reason it never really hit me where I struggle with it until last week. I’ve had a number of people give me feedback in my life that I share too much information about others: there was that time I went to an “Undie Run” and took pictures that I posted online without people’s permission. There’s the fact that every person I’ve dated, I’ve shared our fights/their issues/our small disagreements with friends and family with nary a thought for whether or not that’s shareable information.

Until last week, when I was in a therapy session with my husband and he mentioned that it’s something he finds really tough. “Sometimes you don’t think about the fact that what you tell others will change how they view me or interact with me,” he told me. And I don’t know why, maybe it was the therapist sitting across the room from us, but a light bulb went on over my head and suddenly I was in the perspective of all those people whose privacy I had violated and I felt AWFUL.

I realized that one of the challenges with autism is that you don’t always know what you don’t know (cliche, I know, but true). I know a lot about autism. I spend my life immersed in it. I thought I knew what theory of mind was and had identified all the places that it affects me. But it took a very deliberate effort on the part of my spouse to really help me see where this was affecting him, our relationship, and me.

It’s fucking weird to have those moments. Something you thought was just normal, or a difference of opinion, or just basic human variation starts to look more…pathological. You wonder where you end and the diagnosis begins, what can be attributed to you as a person (your flaws, your preferences, whatever), and what makes sense to label as “autism”. And it’s this awful moment of realization that you’ve been doing something “wrong” your whole life. You can get paranoid that you’ll never be aware enough, never know how different you are, or all the ways that people judge you or find you weird or off putting or bad.

At the same time, it’s a reminder of growth. Ok that sounds corny. But it’s a reminder that I am never “done” processing my diagnosis, and I’m never done learning new coping skills and ways to thrive in a world that doesn’t fully make sense to me. It’s easy when you keep having these realizations over time to feel like you can’t trust your identity or your perception of the world, to feel like your sense of self is always changing or as if you’ll never fully understand your diagnosis.

Being unquestionably different from typical people and having a brain that isn’t fully understood not only by yourself but also by medical professionals means that you’re always working. Yes, it’s exhausting. But it’s also opportunities to improve. Every realization, every piece that falls into place is something that I don’t have to worry about in the ways that made me so anxious when I was younger and was always concerned I was hurting people. In the example above, I suddenly have a way to improve my relationship right at my fingertips. I know how to move forward.

Sometimes finding the balance of accommodations is as simple as identifying what the problem is, like in this case. It will take me practice to exercise that “theory of mind” part of my brain, and to get in the habit of imagining how my actions will affect others. That’s where the accommodation comes into place: my husband knows that it isn’t a desire to hurt him, but simply something that doesn’t come naturally to me. He’ll give me feedback, be more understanding when I make mistakes, and help remind me when I need that.

It’s easy to think when you get a diagnosis that you’ll do all of this at once. That’s just impossible, not only because you’d have to do SO MUCH WORK in one go, but also because only over time do you notice the places where your life needs these kinds of accommodations. You also start to realize that the diagnosis is a helpful tool for framing out problems like this. Before autism, I might have just gotten very frustrated with myself and wondered why I screw up so much. With the understanding of autism, I know what theory of mind is and can understand why it isn’t intuitive to me. I can understand that what I need to do is consciously ask people, rather than try to intuit. It gives me more information, whether or not this particular habit is “autism” or not. That’s why we diagnose: to move forward. That process never stops. What have you unearthed about yourself lately?

Fuck You For Wishing You Could Fix Your Child


The first draft that I wrote of this post was not fit for general consumption. It was angry. It was heartbroken. I furiously typed out a thousand words in fifteen minutes with tears streaming down my face in grief and fear because I didn’t know how to respond to another autism parent acting as if autism is the enemy.

But I gave it a day or two, and I can engage with the topic again, and so here we are. I think it’s incredibly important to genuinely engage with the fear that autism parents feel without letting them say damaging things, and that is what I aim to do here.

Here’s what I want to push back on: autism parents who in the name of being honest say that they wish their kid could be fixed, that they had to give up on dreams of a certain career or of their child graduating college or high school, that they are giving up hope, or that quality of life just isn’t enough. This post was inspired by one video in particular, but I’ve heard so many parents use the same phrases, or talk about how their child will never do x and that no one else will understand that. Particularly that autistics like me won’t understand that.

My autism is not visible. It’s not “severe”. Many people don’t even believe I am autistic. They think that I don’t get what it’s like because I have a job and I own a house and I’m married. They think that the pain they feel when looking at their severe kid is justified because they’ve had to give up dreams of raising a lawyer or a doctor, of it ever being easy, of being normal.

And honestly I’m so fucking tired. I’m so fucking tired of being looked at like I don’t belong in the disability community because I don’t wear it on my sleeve. And I’m so fucking tired of parents thinking that I’m better than their children because I’ve checked some series of shitty boxes.

When a parent says that they have to give up on the hope of a certain milestone what I hear is that they wish their kid could fake it like I can, and what they don’t understand is that they are hoping their kid can be in pain like I am. When they say that quality of life isn’t enough, they are prioritizing their own need to be normal or to have certain wishes fulfilled over the happiness of their child.

What I want all of the parents who say those things to know is that I have reached the milestones. I’ve hit the goals that you dream about for your parents. And the way I did it was through pain. It was by trying not to be autistic. It’s hard to explain exactly WHY all the things that went wrong did, but here is how I felt while I was graduating from high school and getting jobs and going to college.

I spent seven years of my life actively wanting to die.

I am not exaggerating.

Imagine this for me. Imagine that you wake up. You cut yourself. You refuse breakfast. You go to class. Everything hurts. It hurts to not cry for the hour that you’re in class until you can escape somewhere and curl up in the fetal position and wrack with sobs. You refuse lunch. You try to make your body work out even though it hurts, it all hurts, it hurts all the time. You cry like other people don’t, like it feels as if your throat is trying to pull itself out of your body. You get shooting pains down your arm. You wonder when it will happen, when your heart will give out, when the razor will go too deep. You hope it’s soon. You don’t know if you can make it another day. Just staying awake feels like the most gargantuan task in the world. EVERY. SECOND. Every second feels like the worst emotional pain you’ve ever felt, and it’s a constant desperation to just end it.

Not imagine that because you’re in college and passing your classes everyone thinks your quality of life is perfectly fine. You can speak. You can bathe yourself. You can clothe yourself. You’ve hit the milestones. You’re doing everything you’re supposed to do! You’re the autistic all those autism moms think about when they wish and dream.

Except that being alive is the worst thing that you can imagine. You try not to rip your skin off. You try not to stick your fingers down your throat every night. And this goes on for months and months and years, until you’re so exhausted that you don’t know how to go on. But you do because you’re stubborn and you know that the rule is you don’t quit things that you’ve said you’re going to do, so you keep getting up and doing it again even though more than anything you want to die, you want to be done, you want your head to be quiet and calm and easy and you know it will never be.

I can’t say for certain that the reason my life was hell was because I was trying to have more than quality of life, but that sure as hell is my hunch.

When you say that quality of life is supposed to be enough but it’s not you’re telling me that you would rather have the kid who can go to college even if they want to die than the kid who will  need intensive supports but may be happy as a clam. And that’s fucked up. I’s so fucked up. Quality of life doesn’t come from all those damn boxes you want. Do you want a child who’s autistic and not a fucking lawyer or doctor or do you want a kid who’s fucking dead? Because that was the road I was going down until I got adequate help.

Trying to force your kid into the mold of neurotypicality is pushing them into depression and suicidality and all of the shit you should never ever want for your kid. And yes, those milestones that are so important to you? Those are asking for neurotypicality. It’s asking your kid not to be who they are.

JUST STOP. I don’t fucking care if you’re trying to be real or open or whatever fucking shit it is that convinces parents of autistic kids to have these conversations, stop saying that you wish someone would come and fix your kid because I can hear you and I know that what you want is for me not to be myself. It tells me I’m not safe around you, that I have to keep masking, that I can’t rest.

If you have to say and think those dark, hard thoughts, don’t do them on the internet where your child might one day hear them or where people just like your child will hear them. How DARE you say that you wish he could have more than quality of life?

I would trade every accomplishment I have ever had to have had any kind of quality of life for the years that I was masking. I would give up my college degree and my voice and my job if I knew that I wouldn’t ever feel that way again.

And I’m here bawling because I saw another video of another mom who wants her kid to be fixed and all I know is that even the people who compliment me in public, people I know, people who have spoken to me about how talented and accomplished I am, they don’t want me to be who I am. They don’t want to see when I meltdown and go nonverbal, they don’t want to see the scars, they don’t want to know that getting here almost killed me and it’s people like them who did it to me. They want me to keep pretending, and they want their kid to pretend too.

That isn’t any kind of support.

What the Fuck is Executive Functioning? It’s Sure as Fuck Not Being Lazy


Ok fuckeroonis, I’ve had an anger storm brewing for a few days because people have been awful on the internet and also some total garbage juice of a human being murdered some children last week and then our fucking president blamed it on mental illness so I HAVE FEELINGS.

Which means that this post is going to be less safe for work than usual. It’s gonna have some Words and some Thoughts. We’re going to talk about executive functioning and how a lot of asshats out there want to call neurodivergent people “lazy” instead of recognizing that executive dysfunction is a thing.

First of all what does the phrase “executive functioning” mean? It’s something that I talk about approximately once every 30 seconds because it’s hugely important for how humans work, whether we have functional executive functioning or dysfunctional executive functioning. It also is one of those things that when you explain it to someone with dysfunction, a little lightbulb goes off in their head and you can see the light in their eyes and they burst out with “THAT’S why I’m like this?” and it’s really beautiful and affirming to see. Hopefully I can give a few people that moment today.

At root, executive function is an umbrella term that refers to all the thinking skills that help you manage your life and get things done. It includes things like time management, impulse control, task prioritization, transitioning, working memory, attention, flexibility, and planning. From what we can tell, these are all controlled by the frontal lobe, and good executive function is highly correlated with success in school and later in life.

For people who have executive dysfunction it can be inexplicably difficult to start on a new project, break something into reasonable steps, switch focus, manage time (you might look up and notice hours have passed and you had no idea), or keep track of what you’re doing. It can even play a role in emotion regular. You’d be surprised at how many tasks in our daily lives require us to engage our executive function. Everything from cooking a meal (you have to plan ahead to have the ingredients on hand, plan to start cooking before you’re hungry, follow the steps in the recipe, initiate multiple tasks over time, pay attention to each step and potentially multitask, and keep all your ingredients and implements organized then put away) to planning a paper (there’s a reason we go to school to learn how to break this down into steps and understand how to start and plan it as a project).

There’s not really any debate about the fact that human beings have this set of skills and that we often use these skills to accomplish things in our daily lives. Many people don’t realize how often we’re using these types of skills each day because for those who can do it naturally it’s easy to ignore all the small tasks your brain does automatically.

What many people DO have an issue with is the idea that some people (and most often people with specific diagnoses like autism or ADHD) actually CANNOT use these skills in the way that neurotypical people can. That’s called executive dysfunction. In ADHD and autism circles it’s fairly well established that the diagnoses come with executive dysfunction. There are studies that show consistently that these diagnoses are correlated with executive dysfunction and that in imaging studies there are differences in the brains of neurodiverse individuals who are trying to use executive function in comparison with neurotypicals. In addition, patients who sustain damage to their frontal cortex lose executive function skills, indicating a clear correlation.

It’s extremely common for folks to say that people with bad executive functioning are lazy, unmotivated, or just not trying hard enough. Let’s talk about some studies and some science, and what it indicates about the actual cause of the struggles that people with executive dysfunction have.

First, it is possible to look specifically at the skills we label “executive function”. It’s not a general word for “intelligence” or “success”. There are discrete skills, and those skills can be studied. You can check out a 15 year meta analysis of the data on executive function in preschoolers here if you’re interested in the basics of executive function and how we quantify it.

In ADHD in particular, we have a fairly decent understanding of what chemicals are responsible for the impairments, and good evidence that medication helps to improve the situation. We also have fairly extensive studies of how well individuals with autism do on executive functioning tasks in comparison with control groups, that seem to demonstrate impairment in executive functioning in ASD.

It’s easy to think that diagnoses like ADHD and autism are just things that clinicians create based upon their experience with patients. However there is a great deal of money that goes towards studying these phenomenon and trying to understand the underlying impairments. We have years of studies that show in clinical trials people with diagnoses cannot complete executive functioning tasks with the same acuity as neurotypicals, and we also have data correlating those challenges with difficulty in school and work. The science backs up the fact that people aren’t faking how hard it is for them to focus, begin tasks, plan, and remain on task. In fact it doesn’t matter how much they want to, how much their parents yell or plead or bed, how much they punish or reward themselves…what works are executive functioning training/skills programs or medication.

Finally, I just want y’all to imagine that you have the ability to complete your tasks. Every time you don’t, you get flak from parents, teachers, friends. You lose jobs. You get kicked out of school. You’re barely scraping by. You forget to eat or shower. Now I want you to think about whether you would ever intentionally do that to yourself. NO because it sucks, and not being able to take care of basic tasks is awful. It sucks to make mistakes at work, to screw up at school, to know you should be able to get something done but not know how to make yourself do it.

So if you’re one of the folks that thinks everyone should just buckle down and work harder, know that fighting your own brain to complete every task is exhausting and painful. We’re already working harder than you can imagine. It doesn’t actually help anyone, it’s not “tough love”, and it’s not “just the truth” to say we’re lazy and could just do it. It causes shame, self hatred, low self-esteem, and depression because being told you should just go ahead and do something you cannot do is gaslighting on the next level.

Now please never ever say that people with ADHD and Autism and other neurological disorders are just lazy ever again or I’ll have to find you more research.

Maybe We Are More Lonely…But Why?


Credit: Nathan Pyle

I hear a lot of adult type folks talk about the way that technology is leaving us more disconnected and lonely. Most of them paint a picture of people sitting across from each other at the kitchen table, eyes glued to their phones, saying nothing and feeling utterly disconnected.

That’s one way to look at the current rise of loneliness. Maybe it rings true for some people. It doesn’t for me though, and I’m a lonely ass motherfucker. I’d like to propose some other possible reasons, specifically the reasons that I feel the most acutely in my life. Maybe technology is part of it, sure. But it’s also an easy scapegoat and one that’s been blamed a thousand times before for a thousand other societal ills.

Let’s start with a story. Yesterday I went to go get some work done at a local coffee shop. I happened to run into a friend whom I hadn’t seen in a few months, and we chatted for the better part of an hour. It felt GREAT. We connected about similar interests, she told me about an interesting project that I think I’ll join in on, and we shared life updates. It was one of the types of social interactions that many adults today feel are sorely lacking, and one that some people would say are diminished by our reliance on technology.

I can tell you 100% for sure that I don’t have those kinds of interactions not because of technology but because of how neighborhoods, jobs, and families are organized.

Consider the amount of pressure that today’s young adults are under. Consider how busy these little fucks are. I work a full time job, I freelance on top of that, I’m pretty exclusively in charge of cleaning and maintaining my home, I keep up this blog and a podcast, I volunteer. It’s gotten to the point where my boss has told me I’m not allowed to volunteer for anything else. I am lucky that due to the nature of my jobs I can hit up the coffee shop once a week and work there, get out into my community, interact with other humans. The problem is that most other people my age don’t have that luxury, and on top of that we’re all incredibly spread out.

More of us are working retail jobs later into life than in the past. More of us are working multiple jobs and struggling to pay rent. More of us can’t afford housing, and move anywhere we can find a place with decent rent. Whereas my parents generation could afford to buy a house at my age, settle down, meet their neighbors, and pick an area that had a community, nearly every single one of my friends has moved once every year to two years since graduating from college as we try to afford rent.

We’re spread out, we’re run thin, and to be perfectly honest socializing is at the bottom of our priority list when we can’t afford to pay our bills. On top of all that, being social often costs money. Food, coffee, drinks, museums, activities: all of it means having transportation and extra cash.

I rely heavily on technology to remain connected, but it’s not like I don’t understand that it’s important to see other people in person. The problem is how when you’ve got limited money, when people are all spread out and working multiple jobs, when everyone has 12 side hustles happening. It’s impossible to ever actually see each other. The comic above is how 90% of my friends identify feeling right now: we want to connect with our friends, but society is not set up in a way that’s conducive to having friends.

Ok, I’m not one who’s into evolutionary psychology or all about how “if it’s natural it must be fucking great”, but humans are social animals, and our well-being is significantly impacted when we don’t have feelings of connection. For the vast majority of human history we lived in very small communities where you’d see the same people over and over, always be running into and interacting with the folks you cared about. You probably lived with a larger extended family than we do today. It’s not like I’m a revolutionary for suggesting that the nuclear family is dividing us in unnecessary ways, or that living in individual houses where we don’t walk past our friends and families every day leaves us lonely. But studies are showing that we’re more lonely than we were even 50 years ago, and a lot of people want to point at technology to explain that.

But consider that for most of the time the nuclear family has existed in its present form, one income families were typical. Division of labor based on gender was typical. Think about how much we talk about the difficulties of “having it all”. That’s because in order to be a remotely successful adult in today’s world, one job per family doesn’t cut it, so people are working multiple jobs, caring for the home, taking care of kids, and anything on top of that is icing. Is it any surprise that friends are falling to the bottom of the priority list?

I’m sure that the people who hate Millennials and their damn cell phones won’t be convinced by any of this, but I’d like to ask for a little more empathy when it comes to how challenging it is to maintain social connections in a time when expectations are high and compensation is low. Technology is easy to blame, but society wide problems with under employment, under pay, lack of affordable housing, urban sprawl, and more? Those are hard.

How Do You Grow When You’re Managing Mental Illness?


I think I’m going through a quarter life crisis. In the last year I’ve gotten married and bought a house, and suddenly I have this future looming in front of me, one where I’m committed and responsible and adult, one where I can’t have teenage dreams of dropping everything and running away or images of myself doing anything, trying anything.

Sure even as a teen it’s not like I was spontaneous or carefree, but it’s odd to feel like I’ll never have the kind of hope that you have when you’re young, the possibility of a whole life, the vastness of it yawning in front of you.

When you’re young, you have the expectation of novelty. You know that there will be experiences you’ve never encountered before, that you’ll grow and change and mature, that you haven’t reached your final form as it were. And sometimes that’s scary, but more often than not you face it with the kind of confidence that only youth has, especially a youth that hasn’t failed.

But here I am at 27, and while I realize that isn’t old I feel so old. I feel like I have failed and failed and hurt and boxed myself in to a tiny existence of what I’m capable of with my mental health. I have spent the better part of 10 years becoming intimately acquainted with my shortcomings, with the things that I can’t do, with the ways that I fall apart when my support system isn’t what it needs to be. I have starved myself and hurt myself and contemplated killing myself, and I’m highly aware that preventing those things again is always my number 1 priority.

No one spends their youth dreaming that their first goal will always be to not kill themself.

I feel so limited by my brain these days. It’s not that I’m doing poorly. I’m happier than I’ve been for a lot of my life, I know myself better than I ever have, I know how to manage my mental health. And that’s what scares me. I know that what may be the best course of action for me is not changing, is holding on to these same patterns and routines that feel safe.

But I hate this feeling that this is all I’ll ever be. I feel like I’ve stopped growing and the next 50, 60, 70 years will just be stasis.

I know that I have to keep growing. More than that, I know that I have to take on new responsibilities, because adulthood doesn’t stop just because your brain is fucked.

I’m buying a house. There are a lot of things that are challenging for me when it comes to behaving like an adult, and this is one of them. I know that my abilities aren’t quite the same as other adults like me. Sometimes just getting up the energy to sweep the floor is more than I can handle (which means that more often than not my house has piles of cat fur in the corners, or that the kitchen table is covered in dirty dishes, or that my room is a mess of clothes and junk). But I’m reaching a time when I’m outgrowing the apartment life. I want space to make my own, I want space for my cats, I have hobbies that require rooms and equipment, I want freedom.

So how the fuck am I supposed to take on adult responsibilities (which to be honest aren’t even the growth that I’d like) and care for my mental health without overloading myself? What happens when I make mistakes?

Mental illness can make you cautious, afraid of setting yourself up for failure. You try not to push into too many new situations and ensure that you’ve always got support when you do. IT can feel a little bit childish, like you need someone hovering over you all the time, but really it’s more like learning to walk again: you stay close to a wall or railing in case your legs give out. But you want to walk. You want to grow. You want to see new things and expand your world. HOW?

This is where I’m stuck: I feel like I’m walking this delicate tightrope of continuing the self care that has worked for me while also trying desperately to keep myself from boredom and self hatred, to sate that urge to accomplish that has gotten me in so much trouble in the past.

It feels completely impossible. One inch too far towards self care and I grow frustrated and self hating because I’m accomplishing nothing, I’ve wasted my potential, I’m so far behind, I’m bored, I’m stagnating. One inch too far towards accomplishment adn competition, and my body falls into exhaustion, my anxiety ramps up to ten, I’m always worried about when I’ll have the time, I forget to see my friends and I miss a thousand important connections with my husband.

I can tell that I’ve been making mistakes lately. I’ve been pushing too hard and I see it reflected in my anxiety and my fatigue. I started therapy to start coping with it better (again), and I’ve been explicit in telling my friends “make me say no more often”, as well as telling myself that I can’t join any new things. That’s something. But I’m still struggling to find the balance, because I spent threeish years not quite feeling like I was really growing, always looking out for what could be hurting me or pushing me too hard, and in some cases feeling like I was taking advantage of my diagnoses just to be lazy.

That feels awful.

I wonder if I’ll spend the rest of my life like this, tracking symptoms, falling asleep for 12 hours at a time for no apparent reason, pushing and pulling and starting and stopping, circling around balance and never reaching it.


And I’ll probably never feel the freedom of thinking I could live thoughtlessly and easily again.

How The Good Place Does Mental Illness Representation Right


It’s rare that a mainstream sitcom has a character dealing with mental illness that doesn’t irritate the living hell out of me. It’s also rare that any media ever represents philosophy without irritating the living hell out of me, but The Good Place is magic and it does both of these things. Since I’m so often pointing out ways that media fails people with mental illnesses, I thought that for today’s post I’d focus on how The Good Place has done mental illness right and what other shows can learn from it.

Note: I will be spoiling up through Season 2, Episode 11.

The main person that I want to focus on in The Good Place is Chidi, however there are a few other individuals who can be read with a mental illness or neurodivergent lens and I’d like to address them at the end.

Chidi is not introduced as a mentally ill character. He is actually introduced as someone we could reasonably assume is supposed to be in The Good Place. He’s relatively in control, he’s quite intelligent, he’s a good person. We fall the fuck in love with him. He’s supposed to be our main character’s soulmate, and we view him as too good for her.

I highly appreciate this because when you first meet someone with mental illness you don’t know that they’re mentally ill. Typically we mask. We don’t disclose until we trust other people or until we have to. I love that just as in real life, we get to know Chidi just as a person, not as the token anxious person, but as a person like any other.

Only over time do we notice this anxiety that he’s holding in all the time, that he’s constantly worried and fearful, that he can’t make decisions. We start to become irritated with him, why does he behave this way, why is he so frustrating? Because we haven’t been told what it’s like inside for him, we judge (although of course Chidi is charming and kind, so we don’t judge too harshly).

But then we start to see the ways that anxiety can hurt people, the downsides of Chidi’s anxiety. We see the episode where he hurts his friend over a pair of boots, and how he can’t be counted on to be the best man at his friend’s wedding because the anxiety is overwhelming and the pressure gets to him. We see how his anxiety damages him and others, even as he’s trying so hard to be a good person.

This is one of the most realistic ways that I have ever seen anxiety portrayed. Your understanding of it and of the person who has it grows over time, and sometimes you see the positive elements and sometimes you see the negative elements. Sometimes you feel like you understand, or like they’re just like anyone else, and other times you wonder what the hell they’re doing.

But through it all, The Good Place also shows the way anxiety makes chidi thoughtful and exacting, the way he works so hard, and how he can be an amazing friend, mentor, and teacher when he learns to manage the anxiety.

And then after two season of SHOWING us Chidi, and letting us get to know him the way you would an actual human, only THEN does he open up and tell us with amazing vulnerability what it feels like for him. Because when we’re mentally ill we don’t just spill it everywhere to everyone, we wait until it’s impacted something and we feel like we need to explain and backtrack. And he does it so perfectly.

In Season 2, Episode 10, when Eleanor reveals her feelings about him, Chidi explains that his brain is the sound that a fork makes when it gets stuck in the food disposal. His brain is constantly hitting that grinding moment that is irritating and overwhelming and doesn’t go anywhere. Because we know Chidi and care about him, we’re open to hearing this explanation, and it snaps so many things into place.

I’m so glad that with the latest episode Chidi was judged on his anxiety again, and found wanting, because as an audience member I got so angry. I was on Chidi’s side because I knew who he was, and how he was still a good person despite the times anxiety got the better of him. I wanted the judge to understand him and be on his side the way I was. THAT feeling is how I know The Good Place got it right, because I love Chidi with his full history as someone who deals with anxiety. I want to hold him responsible for when it screws things up, but I get that it’s part of him and even a lovable part. I understand that when he cares too much it’s not always a bad thing. It feels so good to see someone like me on screen.