Tag Archives: autistic

Justice, Mercy, and Definitions

Sometimes I like to think about the concept of justice. Specifically, what IS justice, really? And related to that, what is mercy? I plan to get more concrete about these ideas in application to the real world at a later point – right now I just want to keep things more conceptual.

There seems to be an idea, at least in the US, that justice = punishment. We achieve justice by punishing the people who do bad things. I grew up in a conservative christian denomination, and punishment was a VERY big thing in that. Punishment and justice were words that were used practically interchangeably. 

In more examples that I can’t find the source for because it was all from many years ago, I used to occasionally read a blog by an autistic pastor. In one blog he posted a sermon he gave regarding two values that he considered particularly important to christians – justice and mercy. The question was could they coincide simultaneously. The conclusion was they could not. What really stuck out to me when I read it was that he never actually tried to define “justice” for his audience. Instead, it was simply treated as a given that justice means punishment. It was also treated as a given that mercy means refraining from punishment. Since mercy would mean less punishment, and punishment would mean less justice, they two must be at odds.

I’ve seen the same concept come from atheists as well. Even up to one atheist declaring “Mercy is, definitionally, the suspension of justice.”

Needless to say, I find these definitions VERY limiting.

So I say, let’s go to the dictionary! What does dictionary.com have to say about justice and punishment?

Justice:

  1. the quality of being just; righteousness, equitableness, or moral rightness:
  2. rightfulness or lawfulness, as of a claim or title; justness of ground or reason:
  3. the moral principle determining just conduct.
  4. conformity to this principle, as manifested in conduct; just conduct, dealing, or treatment:
  5. just treatment of all members of society with regard to a specified public issue, including equitable distribution of resources and participation in decision-making (usually used in combination):
  6. the administering of deserved punishment or reward.

Now all of this is absolutely fascinating to me. So many definitions! And despite the fact that (in my area of the world) people treat justice as simply being punishment as a default, it doesn’t show up on the list until definition six. SIX! 

Beyond that, justice seems to be about our conduct. Our actions. Our choices. So justice might be punishing a robber. But it could just as easily be making sure that robbery never happens in the first place. This is where phrases like disability justice, health justice, environmental justice, etc come in. 

And then there’s mercy. Once again, going to the dictionary:

Mercy:

  1. compassionate or kindly forbearance shown toward an offender, an enemy, or other person in one’s power; compassion, pity, or benevolence:
  2. the disposition to be compassionate or forbearing:
  3. the discretionary power of a judge to pardon someone or to mitigate punishment, especially to send to prison rather than invoke the death penalty.
  4. an act of kindness, compassion, or favor:
  5. something that gives evidence of divine favor; blessing:

The mitigation of punishment miiiight be seen in definition 1, but we only see it for sure in definition 3. Otherwise, going by these definitions, mercy can be seen as acting just compassion and benevolence toward people. Maybe those who are against us, but also maybe everyone. And by that way of looking at it, we can absolutely have mercy and justice coincide.

It is both merciful AND just to create accommodations for disabled people so we have the same access to things as abled people do. 

It is both merciful AND just to create a world where no one faces the choice of stealing food or going hungry. 

I feel a little uncomfortable bringing up examples because they could be seen as “political” and I’ve generally tried to keep politics off of this blog. In this case, though, it’s necessary. This is a topic that matters to me, and how we, as a society, conceptualize justice directly impacts how we make our laws. How we structure our society. The systems we put in place, and the systems we do not. 

That is why it matters so much. Thinking about what justice is on a conceptual scale is how we decide how we implement justice in the real world. Personally, I think justice needs to begin well before we reach the point of punishment. 

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Rambling about being an introvert

Hi. I’m an introvert, and I want to talk about that.

But before I start, I want to put in some major disclaimers. I’ve been thinking a lot lately about possible places where my introversion stems from, or maybe aspects of myself that lend themselves to introversion. I’m finding myself worried that if I talk about that, it will sound like it’s pathologizing introversion, which really isn’t what I want to do at all. I don’t think introversion is bad, I don’t think it’s wrong to be an introvert, I don’t think my being an introvert is anything I need to fix. I am quite sure that even if I did “fix” the things I’m going to talk about, I would still be an introvert. 

That said, I want to talk about some things that I think intersect with and possibly “enhance” my introverted tendencies.

First of all, I am autistic. I have sensory difficulties and I struggle with my social skills. For years now I’ve been of the opinion that this really impacts how tiring it is for me to be around people. People are just SO MUCH, you know? They can be so loud and so full of motion and communicate with hints and indirect phrases and expect me to communicate the same way so sometimes they hear things in my words that is so far off from the actual words I said that I can’t figure out how they got there, and they can’t explain it to me even if I ask, and it’s just a lot, ok? It’s like:

Me: I don’t like pie.

Person: I think they have cherry pie in that shop, want to go grab some?

Me: ??? I just said??? I don’t like pie???

Person: I thought you meant that you like cherry pie.

Me: Because I said that I don’t like pie?

Person: Yeah!

End result? Peopling is thoroughly tiring. I need to recharge by myself.

Recently I have been realizing that there may be another aspect to this exhaustion, though.

So there’s this thing called “hypervigilance.” This webpage defines it as “Hypervigilance is a state of increased alertness. If you’re in a state of hypervigilance, you’re extremely sensitive to your surroundings. It can make you feel like you’re alert to any hidden dangers, whether from other people or the environment.” 

When I first heard of it (ages ago) I didn’t at all think it described me. I mean, sure, I’m extremely aware of my surroundings and the people in it literally all the time unless I am somewhere safe and completely alone, and sure I’m constantly closely watching the behavior of the people around me and especially anyone I am interacting with and cataloguing all of their norms so that I’ll know if they do something outside of their norm, but that’s just normal, right?! Everyone does that! Ok, yes, people tend to remark about how thoughtful I am because I notice things about them and remember (THIS person always likes to have a red cup, THAT person likes to have a towel when they’re warm, etc), and apparently I’m remarkably observant, but that doesn’t really mean anything, right?

So… ok. Yes. Turns out I totally am hypervigilant. I don’t really want to get into why I’m hypervigilant in this post – suffice to say it’s crap from my childhood and we can leave it at that. 

The point is, this is definitely another thing that makes interacting with other humans SO EXHAUSTING for me. It takes a lot of energy to pay attention to everything. It also definitely contributes to why group interactions are so much harder for me. Not only are the social dynamics of group situations far more complex, but there’s so much more to watch! Each new person isn’t just one new point to observe, they’re a whole new factor. I can’t just watch the person and how they act, I must watch how they interact with each individual as well as how they interact with the group as a whole. Possibly also how they interact with sub-groups. It’s just so much.

This does leave me wondering a bit as to whether or not I would still be introverted if I weren’t autistic and hadn’t been exposed to things that lead to my being hypervigilant. And honestly? I really don’t know. There’s no way to know, because being autistic is a core aspect of who I am and the hypervigilance came about during very early formative years. All I know for sure is that apparently I was a VERY talkative baby and young child, but at some point in those childhood years (like, elementary school) I just… stopped talking. I became silent, and people definitely liked it better that way. 

All I know for sure is that:

  1. I’m an introvert now.
  2. My being an introvert is ok.

Regardless of where it does or doesn’t come from, it’s definitely a major part of who I am now. And one thing it is NOT is something wrong with me, no matter what any extrovert trying to “fix” me has to say about it (sorry, that’s another rant for another time). I’m the kind of introvert who prefers one-on-one interactions, and I am ok just the way I am.

Even if I do sometimes like exploring possible roots of my personality traits.

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I figured out what “high functioning” means

Just to jump straight to the point here – “high functioning” just means “passes for neurotypical (NT).”

Ok, now the ramble about why I think that and how I reached that conclusion.

Non-autistic (and some autistic) people really seem to want to divide autistic people into two basic categories – high functioning and low functioning. The criteria, however, always seemed to be vague and undefined. Years ago I had found a website (maybe on tumblr? I really don’t remember) that was just a collection of what autistic people had been told makes us high functioning. Sadly it either doesn’t exist anymore or possibly I just can’t find it, but it was a fascinating smattering of things. Maybe it’s because we smile, or because we have a job, or because we talk well or write well, or who knows?!

We autistic people (or, at least, a great many of us) have been trying to say that this division isn’t actually useful or helpful in any meaningful way. For instance – I cannot hold down a job. I’ve tried, it does bad things to me. I can write eloquently enough, but I struggle with conversation and am lost in group dynamics. Usually I can go grocery shopping by myself, but sometimes I will get completely overloaded and end up huddled in a ball with my arms over my head while everyone else gives a wide berth to the strange person doing strange things. 

I am generally labeled as high functioning, even as people who are labeled as “low functioning” can do things that I cannot, like hold down jobs or make eye contact. So why am I called high functioning? Well, it’s simple, really. I am categorized as “high functioning” because during brief interactions, I will often enough pass for NT. Unless there is already something wrong (like I’m having sensory overload) I can mask reasonably well for short periods of time and people are unaware that they are talking to an autistic person. 

The strain of masking can be immense at times and take an absolutely incredible toll, but I do it anyway. Why? Because I fear how people will react if they can see that I’m different. That I’m “not quite right.” As I talked about when discussing whether or not to disclose my autism to my doctors, I worry about assumptions they may make about me. Will they still believe in my ability to have autonomy over my body? Will they be like that one guy I met on a train that one time and ask me where my “handler” is? 

Because that’s how it is. People make a quick assessment of you and then make a whole bunch of assumptions based off that assessment. That’s at least partly only to be expected – we can’t deep dive into the personality and abilities of every person we meet – we interact via shared social cues and assumptions. It’s the only way we CAN interact for basically any brief contact we have with another human being. And that’s fine… until it isn’t. 

Sometimes those assumptions are flawed down to their very core. Like the assumption that “high functioning” people don’t need support, and “low functioning” people just can’t do things. Or that time when someone took my saying that I don’t want to be cured as meaning that I don’t need help. Which just… what? How in the world did you connect those two wildly different points? Yet people do, ALL THE TIME. And one of the things people do is make an assessment of a person based on a few seconds of seeing or interacting with them, judge them to be high- or low-functioning, and then draw further conclusions from that regarding their abilities or their needs.

We need to stop using the terms. Still, when I had the realization that high-functioning just means “passes for NT” it really felt like suddenly things fell into place. Suddenly so many things that had been confusing just made sense. THAT’S why people say that. THAT’S what they mean. And that’s why they have no idea what they’re talking about when they try to use it to figure out what we can or cannot do.

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Binding made my dysphoria worse

I really want to talk about the overlap between autism and trans people. Because there is a distinct overlap, and because I exist on that overlap.

So to sum things up quickly – there is an elevated number of autistic people among people who do not identify as their assigned sex, and there is an elevated number of trans people who are autistic. 

This is fascinating, and I really want to talk about it. I don’t just want to write an essay about it, though. I want to find specific things to talk about. And since this is just my lived experience – I literally don’t know any other way of being – it’s kind of hard for me to figure out what, exactly, to talk about.

That said, I thought of something!

A little bit of explanation first; my apologies if you already know this stuff, I’m just trying to be thorough. 

In general, trans masculine people (such as myself) have chest dysphoria. We developed breasts we didn’t want in puberty, and it’s hard to deal with that. Also in general, trans masc people reduce this dysphoria with binding, often either with chest binders or trans tape. The end result is a visually flatter, more masculine chest. For many trans men, the improved visual greatly alleviates dysphoria.

But of course, I had to go and be weird. 

Binding made my dysphoria worse. MUCH worse.

I am a very sensory-focused person. The physical sensation of interacting with the world can often be much more real to me than the visual aspect. And that physical sensation was where a lot of my chest dysphoria centered around.

Generally speaking, binding is not comfortable. You’re kinda smashing your chest lumps as flat as they can go and shaping them into something that more resembles pecs. It doesn’t necessarily feel great, on a sensory level. And for me, it made me VERY AWARE of my chest, ALL THE TIME. Without a binder, I could often just dissociate away from having an awareness of my chest, but that was completely impossible with a binder. 

And I tried binding for real, I really did. I got a proper, quality binder, I read up on the proper way to use them, I really tried my best. Repeatedly. All I got for it was misery. I was physically uncomfortable and hyper aware of my chest, and it did literally nothing to help other people see me as male because I looked too feminine in too many other ways for that one thing to change that. 

So I didn’t bind, because that was the right choice for me. I did get top surgery eventually, once my dysphoria was getting so severe and uncontrolled that I was actually wishing for extreme scenarios to happen that would end with my chest being gone. 

Looking back, I am a little sad that I had to spend so much of my life with a chest that I hated. I never wanted to grow breasts, and I can remember as a pre-pubescent child dreading the fact that I would eventually grow these things on my chest that I really didn’t want. 

Anyway, I really doubt I’m alone in my experience with binders, but this possibility doesn’t really seem to be talked about in trans masc spaces. There’s a common assumption that the way to deal with chest dysphoria is with binding. But that wasn’t my truth, and my truth is valid. 

I’m pretty sure (though I cannot be certain) that my experience with this is due to my being autistic and how that impacts my sensory sensitivity. 

So, since I want to talk about this but am struggling to come up with ideas – what would you like to read about? Do you have any questions about the experience of being both autistic and trans? If you do but are worried the question is too personal or invasive – it’s cool! I have total control over what blog posts I write or don’t, and if I decide something is too personal to answer, I just won’t. But also, you might just have a brilliant idea that would make an excellent blog post. So let me know!

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My Hysterectomy

I definitely seem to get something out of writing out and sharing my experiences, just in general. So I’m going to write about what it was like getting a hysterectomy. If you’re interested in reading one person’s take of what it was like or maybe you just like reading what I write, read on.

CONTENT NOTE: There is a LOT of medical stuff in here. If you find that triggering or difficult to read, please take care of yourself.

I had my surgery on Monday, June 19th. I’ve already written about most of the process that led up to my surgery. After I wrote and published it there was some drama with my insurance (because of course there was) and my surgery date had to be rescheduled, but other than that mess it’s a pretty complete timeline. Oh, also, in the week leading up to my surgery there were several phone calls going over my medication list and getting checked into their system and whatnot. ANYWAY.

The “about to have surgery” stuff actually started the day before, with making sure I have clean bedding and cleaning my torso with the disinfecting wipes they sent me in the mail. 

Then the morning of the surgery I got up at 4am so that I could leave no later than 5:30am, in order to be at the hospital no later than 6am, for a surgery that was scheduled for 8am. Turns out I probably could have slept a little bit longer as I was not allowed to eat or drink or shower, so there wasn’t exactly a whole lot for me to do. So I just did the basics of bathroom, brush teeth, get dressed, and sit around and wait. I made sure to wear clothes that were loose and wouldn’t constrict my midsection at all later on.

Once at the hospital the front desk directed me towards the surgery area, and I went to get checked in. Oh, and masks were required in the hospital, unsurprisingly. I found myself in an absolutely bizarrely shaped trapezoidal waiting room and signed in on a paper sign in sheet. I got to sit for a few minutes before they called me for the check in. This hospital requests that people getting surgery have a “support person” with them and really take steps to include the support person in the process. I was asked who my support person was, how the hospital should send updates to my support person, was given paperwork to hand over to my support person giving them information on what was going on, etc. They also asked a little bit about me, had me sign a form, and I got my hospital bracelet. Then I got to sit and wait until they called me back. I may have spent that time inspecting the shape of the room and marvelling over its asymmetry. You know, maybe.

Ok, so then they call me back, and me and my support person (my nesting partner, Nee) were called back. I was brought into a little exam room for, what I’m calling Part One. This involved taking my shirt off, the nurse wiping my torso down with those disinfecting wipes, the nurse helping me into the gown for some reason, and then handing Nee a plastic bag for all my stuff to go into. She asked me to disrobe entirely underneath the gown and left to give me some privacy for that. Poor Nee was carrying so much stuff at that point. On a side note, I don’t really care for hospital slippers. When the nurse came back she asked me for a urine sample, and when that was done Nee and I were led off to Part Two.

This was the pre-op room, set up with all the surgery patients in little bays of semi-privacy. Nee got a chair and I hopped up onto a bed. I got hooked up to the various monitors and then had the privilege of laying there bored for at least half an hour. One thing I did find a little amusing – generally blood oxygen meters look like little clips that they stick on your index finger. Well, clearly this hospital had had many instances of people messing with those meters and making the machines freak out and was just DONE with that. My oxygen meter was a little sensor that got VERY firmly taped to the tip of my finger. 

Nee was still allowed to be with me, unlike my top surgery experience, and I was also allowed to keep my glasses. Both of those things were VERY nice. So Nee and I chatted some, and I learned that apparently I have a very low breathing rate. I know this is probably not what you’re here for but look, I found it interesting. Nee informed me that my monitor would flash any time my breathing rate went below 10 (no, I’m not sure how exactly it was being measured) and it went below 10 a LOT. Really a lot. I was able to see other people’s monitors showing 16 or 22 and being perfectly happy, and meanwhile mine was sticking to 7 or so. No one seemed to care though, probably because my oxygen levels were just fine (95 and up). So… yeah. Random anecdote about me. I breathe slowly. 

Eventually the hospital staff got around to me, and everything got very hectic, very quickly. I can’t really go over this part in step by step detail, because it’s all such a blur in my memory. Here’s what I can say – a nurse (?) came by with one of those little computer carts and started doing that check in (there appear to be MANY check-ins with surgery. I think this is the third one). Apparently there were three surgeons on my surgical team, and they all came by individually to introduce themselves and explain their role. One of them had a med student tagging along, I guess observing or something. I’m assuming that if that made me uncomfortable I could have asked for the med student to not be there, but honestly I was fine with it. Every single person asked about my support person, and I introduced them to Nee. I think that question was part of their script or something. 

I had to get hooked up to an IV. This involved, of course, the anesthesiologist introducing herself and asking about my support person and whatnot before she actually got started on the IV. For whatever reason the veins in my elbows are REALLY skinny so it’s difficult to place IVs in them. Since I want as few things to be difficult as possible, I went ahead and pointed out a spot on my arm that I knew from past experience was good for an IV hookup. I swear, when the anesthesiologist saw that vein she legit went “ooh!” The actual placement of the IV was… not great. I think they try to use the distraction technique, so someone else was talking to me and asking questions while the anesthesiologist did her thing. This technique is not great for me, as I prefer to do diaphragmatic breathing, deliberately relax my body as much as possible, and look at my other arm. I couldn’t do that this time, and I just ended up flustered and rattled. I don’t know, maybe I could have asked, but everything was happening very quickly very suddenly. 

On a random note – IVs make my arm cold from the inside, and I find that absolutely fascinating.

ANYWAY. I was given some pills to swallow (and just enough water to do it) that were supposed to help with pain immediately post-surgery, and some kind of relaxant through the IV. I was warned the relaxant might sting, but I didn’t feel anything at all. Oh, and they stuck some kind of pad on my tailbone that apparently protects it from the surgical table, and compression wraps on my lower legs to help prevent blood clots.

After all that hustle and bustle I got to wait for a few more minutes when they were, I assume, hustling and bustling somewhere else, and then they came back to unhook my various wires from whatever they were plugged into and wheel me off to surgery. I know that at the same time, someone else came to get Nee and escort them off to wherever they were supposed to wait, but I didn’t witness that part. I also learned that while I was in surgery (or possibly in post-op, I don’t actually know) someone sat down with Nee to give them info about the kind of care I would need after surgery. Again, I didn’t witness any of this, so I only vaguely know what happened. 

Once I was in the surgical room (Part Three!) it was, once again, hustling and bustling. Oh, they had taken my glasses at this point, so it was quite literally a blur for me as well. I seriously cannot see without my glasses. I got to sorta scooch from the bed I was on to the surgical table, which I really wish I had gotten a better look at. The impression I got was that it was vaguely human-shaped, and barely wider than my hips. I had to center myself on it, and they had me put my arms onto little arm-platforms. Then the anesthesiologist was doing something with my IV, someone else put a strap over my hips and literally strapped me down to the table (not sure why and I somehow find this part a little unsettling), presumably someone was hooking all my wires back up to machines, and someone else was putting a mask on my face and kept nudging me to tilt my head farther back.

And then I woke up in post-op (Part Four! Part three went by very quickly from my perspective).

I can remember when all the “about to have surgery” stuff was happening I was remembering how, the last time I had surgery, I lost memories from before I was actually anesthetized. I was wondering when my memory would cut out this time. Once again, I find myself wondering what happened that I was conscious for, but never made it into my long-term memory. Who knows? I certainly don’t.

Sadly, I don’t have any just-waking-up video to share, but I was definitely loopy. I have learned that when I am in post-operative loopiness, I get really, super, incredibly nice. Everyone is just so lovely, and I’m ever so grateful for every single individual thing they do for me, and I want to compliment everyone. 

At this point I was also INTENSELY uncomfortable in my nether regions, and seriously felt like I needed to pee. I did not need to pee. Part of getting a hysto is having a catheter placed for the surgery itself, and that just leaves a person pretty uncomfortable even after it’s taken out. 

So apparently they typical procedure for a hysto is to leave the catheter in after the surgery. Part of allowing a patient to go home is making sure they can pee, and the usual way they do that is to inflate the bladder through the catheter, take it out, and then have the patient use the bathroom. Since that would be utterly horrible for me, they went ahead and changed how they did it for me. I was still incredibly uncomfortable, though.

Anyway, I was uncomfortable and loopy. After working out that I definitely didn’t have to pee for real the nurse stuck a pad between my legs. In just about any other state I probably would have found it mortifying, but at that point I really didn’t have it in me to care at all. Then they asked if I wanted my support person with me, I said yes, and they brought Nee in to sit next to me. I mostly wanted to hold their hand as I drifted in and out of consciousness and was complimenting everyone around me. I also got very concerned about whether or not Nee had eaten a proper lunch. (at this point it was probably around 2pm)

Eventually the nurse who was taking care of me offered me something to drink (I asked for ginger ale) and something to eat (it was just various forms of crackers. I wanted saltines). The other part of leaving is making sure I can eat and drink and keep it all down. So I sipped my ginger ale and nibbled on my saltines and chatted with Nee and generally just hung out until I guess they decided I was awake enough to head off to Part Five.

This time they unhooked all those wires from me rather than the machines (or possibly in addition to the machines) so, wire free, someone wheeled my bed off to some other part of the hospital and into a small private room. I was still thanking everyone, so I thanked the nurse for taking care of me and thanked the guy who pushed my bed. I think that surprised him. 

Part five was overall pretty chill, especially compared to much of the other stuff. I spent some time resting in relative privacy, and only had one nurse attending to me in any way (he was fabulous. I mean, everyone there was great, but I particularly liked him). I was finally able to use the toilet properly and this time I was able to pee! It did not feel good at all. Oof. Once again, my memories of this time aren’t super clear. I think I was there for less than an hour. I was allowed to get dressed, and the nurse warned me that doing so would exhaust me.

He was right. Once I had my clothes on I just sorta sprawled back onto the bed for a bit. At some point during Part Five we went over post-op instructions around movement restrictions, how and when to take painkillers, when I was allowed to shower again (the next day! So soon!) and suchstuff. 

We also had to make sure I had at least a little bit of capacity to stand and walk before I could go. I could… sort of, but I was literally swaying. It was enough, though, so Nee went off to bring the car around to pick me up, and the nurse got me into a wheelchair to wheel me out front to meet them. Along the way we had the following delightful conversation:

Nurse: So what car are we looking for?

Me, totally not remembering what the car looks like: uhhh…. Nee’s car.

Nurse: …

Me: oh, sorry, that wasn’t helpful at all, was it?

Nurse: (laughing) that’s ok, you’re drugged!

We did figure out which car it was, though I was absolutely no help at all in that process. I sorta collapsed into the front seat while vaguely wishing I could hug the nurse. I think he said something to Nee though I’m really not sure, and then we were off home. I mostly dozed on the drive. I was EXHAUSTED. 

We got home a bit before 4 (and I guess that makes this Part Six). I took my first round of pain medication, Nee helped me into my bedroom, and I just collapsed onto my bed and slept for a couple hours. And I mean “collapsed” quite literally here – I basically faceplanted onto my bed and fell asleep immediately. I woke up in that same faceplant position. 

I called Nee to ask for help into the other room (there are a lot of stairs in my house, and I was really not able to navigate stairs on my own), and did more more sipping of water and nibbling of crackers. My primary painkillers are acetaminophen and ibuprofen, which have different schedules for when they are to be taken. So we sorted out what I was to take when, wrote the instructions and times onto the bottles themselves, and then programmed all those times as alarms on my phone so my phone can notify me when it’s painkiller time. That part was remarkably difficult for me – my brain was definitely still not working right. I had Nee check that I got the alarms correct and I guess I got it so wrong that they just re-did all of it. 

Then it was back to sleep (aside from waking up for painkillers and immediately going back to sleep) and that was my Day of Surgery.

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Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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I’m getting surgery!

I’ve been really struggling for the past few weeks to get my brain in the zone for writing. There’s actually a pretty simple reason why – I’m getting surgery soon! And I’ve been REALLY preoccupied with All The Things that happen in the weeks preceding surgery. Sooo… I decided I would just talk about that. Want to get to know me better? Or possibly learn about what’s involved in getting a hysterectomy? Then read on.

Content Warning for medical talk.

Right. So I’m getting a hysterectomy – which is to say, I’m having my uterus removed. YEETERUS. In my case, it’s a trans thing. I’m a trans man, having a uterus causes me distress, so I’m getting it taken out. I kind of wish I could give it to someone who wants a functioning uterus, but as far as I know that’s not a thing yet. Also, while I never had it confirmed, multiple medical providers have considered it possible/likely that I have endometriosis, so my uterus might not be desirable anyway.

This has involved a lot of doctor visits. Step one was choosing a place to go through to get my surgery. At the time I did not have a PCP, so I was pretty much on my own to decide. Once I did that, step two was making an initial appointment. This was basically a consultation where we discussed my options including types of surgery available to me (laparoscopic vs. robotic), exactly how much I wanted removed (all of it, but some cis women who need hysterectomies keep their ovaries for hormonal reasons), what sorts of things I could expect, and the next steps to take towards surgery.

Next step was… basically a second consultation, this time with the surgeon who will be performing the surgery. And as I talked about in a previous post, this is where I really started to be conflicted about whether or not to disclose that I’m autistic. I genuinely get confused and a bit lost with this mix of straightforward and roundabout communication in healthcare settings, and I could tell I was missing cues and not responding the way an allistic person would. 

Anyway, that appointment got far more specific, I had more question, there were things the surgeon wanted to know and… well…

TRIGGER WARNING I’m gonna talk about a pap smear and briefly mention sexual trauma. I do not go into detail on either one.

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Apparently before getting a hysterectomy surgeons REALLY want to get a pap smear first, just so they have more information on what’s going on with those parts. This is a procedure that I find EXTREMELY distressing. It’s physically painful, induces a great deal of dysphoria, and I tend to get PTSD symptoms for at least a week afterwards with vivid and invasive memories of sexual trauma refusing to leave me alone. Technically there was a way to do it with me under anesthesia, but it would mean being put under twice, once for the smear and then AGAIN for the surgery, which isn’t a great option for several reasons. And they didn’t have the capacity to just sedate me, which also would have helped.

In any case, I consented to the pap smear, and it was painful and dysphoric and I basically had flashbacks for a week after, and I dissociated so badly I basically couldn’t walk when it was done. After, the surgeon asked me if I wanted water and all my brain came up with was ERROR. ERROR. ERROR. Point being, I was in a bad place. This part of things was HARD.

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Ok, done with that part. You can pick up reading here if you needed to skip it.

Another lovely (/s, it isn’t lovely at all) thing I have going on is a hypertonic pelvic floor. This basically means that my pelvic floor muscles are too tight all the time and don’t know how to relax. I need physical therapy (PT). So my surgeon wanted me to get an initial assessment just to make sure my pelvic floor issues won’t interfere with healing. 

That turned into yet another situation in which I wasn’t sure whether or not to disclose that I’m autistic, and the physical therapist was yet another person who mixed direct communication with indirect communication. My therapist (mental health, in this case) has suggested that if I’m uncertain about disclosing that I’m autistic but also struggling with understanding everything, I could just start out by directly asking for all communication to be extremely direct – to the point that it might feel rude to them – and just blame it on anxiety or something.

It’s not a bad idea, but I haven’t tried it yet. And one thing I have found is that people will readily agree to being direct, and even totally believe they’re being direct, while in fact continuing to be totally indirect. It’s just such a THING, and it can be so incredibly tiresome to navigate.

ANYWAY. I digress. The PT appointment went fine and nothing happened that caused significant dysphoria or any dissociation. (ok, I did briefly dissociate once while we were talking and was extremely disoriented when I “came back.” The physical therapist probably noticed that I suddenly looked a little confused, but I think she took it as not quite understanding the last thing she said. I did some grounding exercises to stay more present after that. No idea why it happened) The pelvic floor is a very intimate area, but to my benefit I know someone who knows someone who is explicitly open about treating pelvic floor issues in trans patients, so I jumped on that in a heartbeat. The exam was external, I only had to partially disrobe, and while I did get a little stressed, it really wasn’t that bad at all.

She also confirmed to me that I am doing this in the best order – hysterectomy first, then PT. Apparently she and her colleagues have anecdotally found (no studies on this as of yet) that a hysterectomy can itself greatly alleviate the symptoms of a hypertonic pelvic floor. It’s not a cure, but it helps, which means hopefully less PT will be needed once I’m ready to do that.

I have also spoken on the phone with my HRT provider, as there is a high chance my dose will need to be adjusted after I no longer have ovaries. So we have a post-surgery plan in place to track my T levels and see what needs to be fiddled with. Sadly, this is exactly the kind of thing that can’t really be predicted – it’s going to be blood tests and gradual adjustments, much like it was when I first started T.

Next up is an appointment that’s basically dedicated to signing consent forms and making sure I’m squared away, and then finally it’s the surgery itself.

Roughly around the time of the second consultation when I was getting things going for real, I had a bit over a week of a flurry of phone calls and emails and appointment making and getting my schedule arranged. I struggle to talk on the phone as the sound quality on phone calls is so low that I have to really focus hard to understand what the person is saying. This means that ALL of my processing power is focused on understanding what the person is saying and there is pretty much nothing left over for the conversation itself. I deal with this by anticipating as much as possible of what will be spoken about and what I will be asked, and then writing it all down so I can just reference my “phone call” notes. I mean, I even write down my phone number for every single phone call where I’m likely to be asked for my number. 

And that’s what I’ve been doing! I’ve been a little bit too overwhelmed to actually feel excited about it, but the “overwhelmed” feeling is gradually decreasing, making more room for excitement. I’ll admit, though – I’m pretty proud of myself for how much I’ve done. I am apparently VERY motivated here.

Anyway, that’s what the process has been like for a trans man in the US. Thank you for reading. If you have any questions go ahead and ask. I’m feeling pretty open about all this.

ADDENDUM: I wrote this post yesterday. Today I got a package in the mail from my surgeon’s office with sterilizing wipes and instructions on how to use them before surgery. I believe I got the same basic thing before top surgery. So sterilizing my torso as much as I can is part of things as well.

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If a diagnosis matters to you, then it matters

Image by Nick Youngson creative commons license

In the autism spaces I’m in, a particular scenario comes up pretty often. It goes roughly like this: A person, I’ll use the name Finley, is an adult who believes they may be autistic. Finley has looked into as much as they can – they’ve checked out the diagnostic criteria, compared it to their own behaviors and history, and something is clicking. It looks like autism might explain parts of themself that they have struggled with their whole life. Finley isn’t super comfortable with self-diagnosis and really wants to know for sure, which means going out and finding someone to go through an official diagnostic process. Then, the people around Finley try to stop them. The people say it’s pointless, there’s no use, Finley is an adult now so why bother, it’s an expense that has no purpose. Finley ends up in an autism space to ask about it. Is it worth getting a diagnosis? Are all those people right? Should Finley just give up on this idea of knowing for sure?

So to be totally, perfectly clear – Finley, if getting a diagnosis matters to you, then it matters. Period, full stop. You shouldn’t have to justify it to anyone, because the fact that it matters to you is ultimately all that matters.

That said, if you’re in the US, you’re probably going to have to pay for it yourself and it isn’t necessarily cheap to do. If you need financial help to access diagnosis, the sad reality is that you will probably need to find a way to justify your need to other people. You shouldn’t have to, I think it’s wrong, but this is the world we live in. So how to do that with people who really don’t see the point?

This can honestly be tough. When I first sought an official diagnosis I asked my dad if he would help me pay for it. To be clear – I didn’t ask him to pay for the whole thing, only if he would be willing to contribute some amount. His response was to compare it to an employee asking their boss for a loan for a job project, and demanded I justify it in those terms. I’ll be honest – I was pretty shocked by that and did not actually manage to comply with his demand. He did not help with the expense of diagnosis. Which is to say – I know extremely well that sometimes the people who are supposed to support us just don’t or won’t. 

So how DO you justify it to people who don’t see the point? Well, part of this depends on whether or not they are acting in good faith. If they don’t want to see the point, nothing you say will convince them. That is just an unfortunate truth. But if they genuinely WANT to understand, there are a few ways to approach this.

If you are in a situation where you need accommodations in your job or wherever else, an official diagnosis will really help you there. If they try to come back with the claim that you didn’t need accommodations before so why do you now, well… let me make an assumption here. My assumption is that you DID need those accommodations the whole time, and the fact that you weren’t able to get them has led to burnout, meltdowns, shutdowns, and other unpleasantness. You’ve reached a point where you’re running on fumes, and something needs to change. An official diagnosis will help you get the changes you need.

The comfort of certainty. If you’re like me, not being able to point to a diagnosis to say FOR SURE that you’re autistic just doesn’t feel good enough. Like, ok, I put literal years of time into looking into it and reading and looking at a variety of diagnostic criteria and I reached a point where I was able to be pretty expletive certain, but I just wasn’t comfortable with that. I wanted to know for sure. I’m fortunate enough that I had other people in my life who understood and supported that, even if my family didn’t.

To be clear – I’m not at all trying to say that official diagnosis should matter to everyone. Only that if it matters to YOU, that’s valid and real. I respect that and so should everyone else. It’s unfortunate that we live in a society where official diagnosis is often unattainable without social support. I’m sorry if your social support is lacking and you’re surrounded by people who are dismissive of you. I believe you, and it matters.

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To disclose or not to disclose

I’ve been thinking a lot lately about accessing healthcare while autistic, particularly while less-visibly autistic (since that’s me). Some in more general terms, but also in very concrete, this-is-relevant-to-my-life-right-now terms.

See, I’m planning on having a medical procedure done (it doesn’t really matter what it is, and no, I’m not sick), which is involving a number of consultation appointments and appointments for paperwork, appointments for scans – all sorts of things. 

I have not told them that I am autistic, and I don’t know if I should.

As it is, I am masking really hard during appointments and doing my very best to look and act in a way that people would see as “normal” while simultaneously gathering information, asking my questions, and generally just being mentally present for my appointments. This is an enormous amount of work and consistently leaves me completely exhausted by the end.

Of course, that on it’s own wouldn’t be enough for me to consider it a particular problem, but the fact that my mask is hitting limits and sometimes I’m having noticeable processing lag or not responding the way I realize later I’m supposed to IS enough for it to be a problem.

Communication with doctors has been an incredibly confusing blend of direct information and them (I assume) trying to be polite – except a large part of “politeness” is actually just being indirect. Then I take longer to respond, or I ask a clarifying question and the doctor gives me a funny look because from their perspective, they literally just told me what I’m asking about. The processing lag gets worse, I start to get flustered, it’s overall awkward. 

So yeah, I think about letting them know I’m autistic so that maybe they’ll understand why communication goes a little funny sometimes.

Buuuuut… I worry. 

I don’t actually know how they’ll respond. I’m sure that from their perspective, they will be supportive and understanding. But sometimes all that adds up to is immediately, drastically lowering their estimation of my intelligence or my ability to make choices about my own body. I don’t know what kind of latent assumptions they have about autistic people that will negatively impact our interactions if I make it known that I am autistic. 

I mean, I once casually mentioned that I’m autistic to a person on a train, and he immediately asked me where my Carer is. I don’t have a carer. I was taking the train by myself. There are assumptions everywhere. Since they are assumptions, the people who carry them are generally extremely comfortable forcefully shoving their assumptions onto me. It’s one thing to explain how my autism works to a random stranger I’m never going to see again. It’s another thing entirely to explain it to a doctor who is going to be Doing Things to my body.

Most of my posts to my blog are because I have Something to Say about a particular topic, but this time it’s because I’m genuinely lost. Is it better to share or not? I really have no idea. I wish I did.

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