Musings of the Neurodivergent

I’ve been thinking–as I often do–about the distinction between “wrong” and “different.” Specifically, it’s on my mind as relates to both mental and physical health.

For instance, when I was growing up we knew that my father was “disabled,” and he even had a pin that said, “Disabled still means able!” Which always made perfect sense to me. After all, if the Starship Enterprise fires to disable another ship’s warp drive and weapons, the ship is still able. The warp drive has been disabled, but it’s still able to travel at impulse speeds. The weapons are disabled, but it’s still able to maintain life support systems. The ship isn’t destroyed, it only has certain systems disabled.

Or, to put that in less nerdy terms: one of my cars has a broken air conditioner. The other car has a broken muffler. Both cars are disabled, but neither of them are broken down. One has a disabled AC, the other has a disabled muffling system, but both are fully able to turn on and go and get me places. That doesn’t mean that they’re technically fully functional.

For the remainder of this to make sense, please understand that I am starting from certain assumptions–or more specifically, certain deeply held beliefs. If I am wrong about these things my entire reasoning falls apart, but, as is the case when one deeply believes something . . . I don’t think I’m wrong. Those assumptions are:

• Neurodiversity exists. That is, there is diversity not only in the overall abilities of people based on their brains, but in the actual wiring and structuring of those brains to far greater degrees than the neurotypical world tends to realize.
• Neurodiversity is not “broken” but is simply a different way of functioning. (There is too much written about this to link to, so here are a few of my favorite social media pages that celebrate neurodivergence: Neurodivergent Rebel, Unashamed Voices of Autism, Michael McCreary, Jenn has ADHD, Autie-Biographical Comics, Growing Up Autie, and for the one non-Facebook link, on TikTok I love CourtneyADHD.
• Society–or at least “western civilization” and many other cultures that have been influenced (rightly or wrongly, that’s no the topic of this post) by “western civilization”–is set up specifically to enable proper functionality between neurotypical brains. (See any of the above social media links for more on that too.)

So, I like to describe neurodiversity like this:

Think of brains as mini computers (which they kind of are, but also kind of not) which each run an operating system. Say there’s one operating system more common than any of the others. (Enough that people seem to believe it’s the operating system most brains run, but personally, I’m not sure we have enough information about all the different systems to know if it’s really more than 50% of the population, or if it’s just a greater percentage than any one other kind of system.) That more common system is the neurotypical operating system, so let’s call it NTOS.

Now, the divergent operating systems are not only one other kind–there are, for instance, several different kinds of systems even within the autism spectrum, then we throw in ADHD, possibly dyslexia and a few others (depending on who you ask), and maybe even others that haven’t been identified yet. But we’re not going to try to name each system, we’re just going to make it a category for all brains running any system that is not NTOS–those systems, collectively, we will call the neurodivergent operating systems, or NDOS.

Because the world is optimized for NTOS, brains running any variation of NDOS tend to have (to varying degrees) difficulty connecting into the overall network, or into certain parts of the network. They need additional patches to allow them to connect properly (medicines, therapies, various techniques) not because they have something wrong with them, but simply because they are connecting to something that wasn’t designed for their specific OS.

Now, not every difficulty connecting to the NTOS-optimized network comes from running an NDOS. Some of them come from bugs or malware–that is, various mental health problems, not just differences. Some of the individual brains may be put out with the bugs already in the system, others (probably most, though some may be more susceptible to security breeches that allow it to happen) have malware enter the OS and corrupt some factor. These are problems, and sometimes they can’t be completely fixed but they can have patches (medicines, therapies, techniques) that allow them to function within the overall network. If left unchecked, not only will functioning within that network be difficult, sometimes they can cause malware to be spread further (with unchecked toxic behavior stemming from the mental illness, for instance).

If you aren’t sure what I’m talking about with the malware and bugs, let’s look at a few things that people debate whether they’re just a differently-functioning brain or whether they’re an actual problem:

• depression
• anxiety
• Obsessive Compulsive Disorder
• any of the ten diagnosable personality disorders

So which things are generally (to most, except possibly those who think it’s a problem to be fixed rather than a different operating system) accepted as definitely neurodivergent–different but not bad?

• autism spectrum
• Attention Deficit Hyperactive Disorder
• dyslexia (though this one I’ve seen debated a little more often)

But here’s where it gets complicated:
When you turn on your (real, not metaphorical) computer, whether in the form of a laptop, desktop, tablet, or phone, it will tell you what operating system it runs. It’s running MacOS, or WindowsOS, or AndroidOS, or Apple iOS. Humans aren’t quite that obvious. Our mental OSes aren’t branded. Unfortunately, neither are our bugs or malware (which are less likely to be anyway of course). And some of the difficulties either of those have in patching into the NTOS-optimized network can look very similar. This is part of what leads some people to conflate them, and is also why they’re not always correctly identified as one or another.

Some people question why we need to “slap a label on everything” anyway. But as someone who has mental factors of the NDOS as well as some bugs/malware in the system, it’s important, not only to know they’re there, but to know the difference. I need to know that not everything going on in my brain is wrong. I also need to know that it’s not all right. I need to know what is actually fine but just doesn’t connect to the system well so I can learn the patches that allow me to connect into the system. I also need to know which things are wrong so I can do what I can (with the help of professionals as necessary, which is frequent for me) to fix it, and to figure out patches for the irreparably damaged parts.

This all brings me to why I’ve been thinking about this. I recently heard on a podcast about a story by H.G. Wells called The Country of the Blind. They said it’s one of his most famous stories and I definitely studied H.G. Wells in school so I’m surprised I’ve never heard of it, but I found it to read here and it’s fascinating and definitely thought-provoking. I’m just not sure everyone reaches the same conclusion I reached from it.

If you haven’t read it, I highly recommend clicking that link and reading it, but as a very quick overview:

There’s a village that encountered a disease that caused them all to go blind and an avalanche cut them off from the rest of the world, so this village existed in its own little valley that was now essentially a basin, and developed their entire society based on their needs and abilities with their 4 remaining senses, eventually (over 15 generations) forgetting that vision had ever existed. When an explorer fell off a cliff and, after waking from unconsciousness, found his way into the Country of the Blind, he remembered the proverb: “In the country of the blind, the one-eyed man is king.” Well, he had two eyes, so even better! He would be their king! Except of course, as the story went . . . he would not. In fact, he was regarded as insane because he kept talking about this thing that none of the rest of them could perceive, and about this outside world that they didn’t know existed since as far as they were concerned their basin surrounded by steep rocky walls was the entirety of the world. They had entire belief systems surrounding this and anything he said that didn’t make sense to them not only sounded crazy, but also challenged their personal beliefs. So the man with vision was not king, but was instead relegated to the lowest citizen, regarded as stupid and insane. (There’s more, but if you want the ending you’ll have to read it. 😉 )

So the point of the story that a lot of people seem to take (from what I’ve found) is essentially the same thing that I was talking about way back at the beginning of this (becoming epic-length) post: “Disabled still means able,” “Not disabled but differently-abled,” etc. But the reality is . . . they lack vision. They do not suffer for their lack of vision, and I think one of the big difficulties people have in processing disabilities as not meaning invalid is in thinking that if they are disabled they therefore must be suffering. Deaf culture–an entire beautiful culture that has arisen out of not having a sense that most people do have–is vibrant evidence that it is possible to be missing something and not be suffering for it.

note: I am losing my hearing, but am not technically part of Deaf culture because I have always been hearing before, and my way of thinking is dictated by spending most of my life developing my neural pathways as a hearing person. I do, however, have a deep and abiding love and respect of Deaf culture. I am not commenting, can not comment, on the presence or absence of suffereng in any given d/Deaf person’s life, with or without regards to their d/Deafness, but am only saying that the culture, as a whole, is built on language and neural pathway development that have been determined by the 4 senses they do have without inclusion of the one missing, and that culture is not, in my limited experiences or observations, based on suffering.

In the Country of the Blind, the seeing man could not be king because he was in their country. Had he brought them back to his own country, optimized for the seeing, he would have been able to rule them with no problem (except that there was already a ruler there) but his desire to rule the moment he realized he had an apparent advantage over them (that turned out not to be an advantage in the country optimized for their own way of life) was, in itself, a significant problem. But had they been able to accept that he had one sense they did not, and had he been able to accept that even if they lacked that one sense that did not mean they suffered, how much he could have contributed to their society and also learned from them about how vision is not the entire meaning of life!

The brains running the NDOS so often (most of the time, in my observations) do not have a community, much less a world, optimized for their own mental operating systems. Unfortunately, the world often tells them that this is because they are set up “wrong” rather than that they are simply running a system that the network is not optimized for. Whether anyone is telling them that or not (and usually at least someone is) they can easily reach that conclusion on their own because everything feels wrong when trying to do it in this network they’re not optimized for. The trouble is, even if they are blessed to not live with significant traumas that often occur when people running NTOS identify that someone is not patching into the system correctly (ie. bullying, labeling them as malfunctional, etc.), there are still microaggressions just like any other minority can experience–things like, “Well why don’t you just do it then?” “Yeah, nobody likes having to organize stuff but it just needs to be done,” “Things can’t always go your way,” and of course the constant gaslighting of, “No, that’s not how that is.”

I’m not using this comparison to try to claim that neurodivergent people have additional senses that neurotypicals lack. I’m not saying they don’t either, I don’t know whether they do or not. I’ve only experienced life from my own perspective of my own operating system. But I can observe people who run other operating systems, I can see what they don’t struggle with, but I can also see what they do struggle with. They just happen to live in a world where many of their greater struggles are already accounted for, assumed to be part of life, and taken care of.

I also know what it’s like dealing with depression. All I can say is, if we used “physiodivergent” to describe physical disabilities, but not to describe every difference of body (because everyone is different of course), my lack of physical flexibility, my somewhat unique and ever-shifting eye color, and my freckles would not make me physiodivergent no matter how much they make up part of who I am. If I lost a limb, that would, no matter how much I learned to thrive in a life with three limbs instead of four.

My depression does not make me neurodivergent. My ADHD does. No matter what my struggles are, no matter which ways I thrive, they simply are not comparable contributing factors to who I am.

Birds and Fishes

A bit of context: I wrote this at night, while struggling with depression and after a week of being out of my meds. The metaphor is solid, the angle of origin is a bit . . . dark.

“Sky and Water” by M.C. Escher, 1938

If I’m useless when I’m not on meds how can I be anything but useless even when I am on them? My mood rises and dips like an EKG, and when I’m at the peaks, I can remember the valleys but they don’t feel real. When I’m in the valleys I barely remember the peaks at all. I can only conclude that the valleys are who I really am, and if that’s the case, what are the peaks? Fake?

My only conclusion is that the real me is the valley me, and sometimes I can fly above that. Even for a bird, for whom flight is a natural ability, flight still isn’t the natural state. It’s not like fish, who are naturally swimming in water whether awake or asleep. A fish can spend its entire life suspended between air and ground, but a bird cannot spend its entire life in the air. The air is only where it is between times of landing. Sure, one may just as easily say that landing is what a bird does between times of flight, but playing with the wording doesn’t change that if a fish stops trying, it will still be in water, but if a bird stops trying, it will succumb to gravity and land–and without trying, that landing can be fatal.

I am clearly a bird, not a fish. And sometimes, I’m just so tired of trying. I’m a bird who lacks a stable ability to fly, a bird who requires therapy and medication to be able to take flight. Like Escher’s picture of fish and birds melding together, I’m a bird among fishes, or an aircraft trying to stay in flight among creatures that naturally float there. I’m an airplane being laughed at by the hot air balloons that naturally rise around me, that don’t even know how to land on their own. A bird that is fighting gravity to stay up, surrounded by air-fish that just naturally abide in the air at all times. Whatever I am, my natural state is succumbing to the gravitational pull of which those around me seem entirely unaware.

And I’m tired. If you put moods on a scale of 100, my natural state is between 20 and 40, while other people’s natural state is closer to 60. Why? Why do they just . . . naturally float up there and I have to fight not to sink too low? Why is “up” natural to them, and to me it’s a scary and precarious place, because down is so easy to fall to, such an inevitable eventuality? It makes no sense that 60s take so much effort and seem so fleeting, when it’s 40s and 30s and 20s that are so utterly draining. And it makes less sense that I have to fight so hard to stay above sea-level and not drown, when those others, the flying air-fish, just hover without even knowing that they’re there, thinking that dropping even close to sea level can only happen when pushed or pulled that way.

Not that it really matters what others do or don’t do. It’s disheartening a bit, to realize that I’m broken in this way, that what’s natural to others is so much effort for me, that even when I get there without actively putting effort into it it’s always with the looming knowledge that I’ll find myself approaching sea level (or lower) again much sooner than I want. But it doesn’t really matter, all told, if other people have to work at it or not. I’d be just as tired if they were all tired too. Just . . . maybe there would be more ways to handle it, if it were the natural state of the species. If everyone were a bird trying not to fall into the expanse of ocean below while having no land to rest on, instead of these air-fish that hover above the ocean so effortlessly that they don’t even know there’s another way to be. Maybe there would be more perches built into the society if more of us needed them. But the reality is, you end up with caring and concerned air-fish looking at the birds and going, “Oh, they need a way to rest, let’s try to help them,” and making these ways that require flying against wind to get to them. Sheaves of paperwork to fill out in order to “rest,” insane amounts of phone calls to make. They’re bird rests that are designed to be accessible by air-fish not by birds.

But I’m a bird. A dirty, grimy, gross bird losing half its feathers and fighting against a wind tunnel to try to get to a tiny perch that isn’t big enough, and that I can’t stay on long enough, all the while listening to air-fish all around who have never experienced the true gravitational pull, saying, “Hey, take care of yourself, get to a perch. It’s right there. Just land on it. You’ll feel so much better after a rest.”

Still Kickin’

So. It’s been a minute.

Well, like, 2+ years, whatever.

Obviously, I don’t write here often. Partly because I’ve been insanely busy so sometimes I mentally write a post and then never type it out. Partly because I’ve discovered using fanfiction as another way to explore things with my mental health and such. Partly because I’ve been doing much better the past couple years.

Much better. Not all better. And this week has been particularly rough.

Have you seen the Twitter thread from a while back–back in 2017, in fact–about grief being like a box with a ball and a button in it? The analogy is that when the “ball” of grief is bigger, it hits the button (triggers a “grief” reaction) more frequently. As it shrinks, it hits it less often, but when it does hit it, it hits just as hard.

The thing is, as perfect as that analogy is for grief, I really think it can work for anything with triggers. I think that my anxiety is getting better, then my lovely mother-in-law stops by my house and helps clean some things up, and I’m in a heart-pounding, breath-shortening, ears-ringing state of anxiety at the fact that my house wasn’t already perfect and, in fact, that I required help. I KNOW that I need help, I WANT help, but when it comes it feels like a personal failure. Because anxiety, depression, and PTSD working together to screw me over don’t really care about such paltry things as logic.

I wrote a poem the other day to express how I felt, but I want to specify one thing here: I am not, and have not been, suicidal. I added a couple lines in here about trying to find the right way to express to people that I have no desire or intention of dying, I just really need help. I need a break . . . before I break. But how do I take a break from my own mental health? Still, even though I try to express that as “don’t worry, I’m not planning to die or anything,” the very fact that I mention it makes people sit up and go, “Wait, why would you bring that up? Are you suicidal and trying to convince us otherwise?” But if I don’t bring it up and just talk about being so tired of life and wanting to be able to have a break from being me for a while, people freak out and seem to think it means I’m a danger to myself. I’m not. And if anyone here is, please call your local or national suicide hotline. The United States number is: 800-273-8255.

Breaking
by Hoarding Child
November 18, 2021

What do you do
When a laugh feels like a lie?
Where do you turn
When your tears only fall inside?
How do you say
You don’t want to die,
You just want to get away
From the brutal pain of life?
How will they believe
You aren’t looking to end it,
You just are so tired
Of having to try?
They don’t know that
It’s too heavy.
I shake under the strain.
Too wearying.
I gasp through the pain.
The world spins on without me,
Leaves me reeling in its wake.
I give and give so selfishly,
All so I can take.
I’m breaking under the load.
But nobody knows.
So I sit
And break,
Gasp,
And shake.

The load He took upon His back
The pain He bore for me
I cannot fathom what He felt
All to set me free.

This life on Earth is just a time
Like vapor off the sea
But I can’t imagine facing it
With the whole load on me.

Now, I know not everyone reading this is a Christian and those last 8 lines might not ring true for everybody. Find someone to share your burden. Call a hotline, get a counselor (I’m so pleased to have one again–after most of 2021 without one when my previous counselor retired somewhat unexpectedly in February). Find a friend who can help bear the burden, but don’t expect them to do the work of a professional. Most people aren’t equipped for that. But please, find someone.

Remember to look at how far you’ve come. Recognize and rejoice over not being in the same place you were before. But when it comes to it, also realize . . . the button is still there. Just because you’ve made progress doesn’t mean a trigger won’t still get hit. Just because a trigger gets hit just as hard as ever, doesn’t mean that you haven’t made progress.

Keep moving forward!

It’s hard sometimes.

But we got this.

Monkey See, Monkey Don’t

Once upon a time, there was a family of monkeys. Most of the other monkeys lived in trees, but this family lived in a deep hole in the ground. The baby monkeys were always dirty. They looked at the monkeys in the trees wistfully, wishing they could have the fresh fruit from the tree tops. Instead, in the pit, food was scarce and they often found themselves eating whatever rotten fruit remained. The peelings of the fruit remained scattered throughout the pit, and the whole region was infested with bugs and filled with their filth.

The young monkeys knew things weren’t right here, but it was all they’d ever known, and climbing out of the pit was so hard. Even worse, they were regularly made to believe that life in the pit was all they deserved. There were too many baby monkeys, they were told. If there weren’t so many of them, THEN the adult monkeys could make a real home for them up above. If the baby monkeys just worked a little harder, tried a little more to clean the pit up (without the grown-up monkeys ever helping or teaching them how) THEN the pit would be as good as the trees. But the baby monkeys didn’t know how and the grown-up monkeys only talked about the what-ifs. The talk changed nothing.

Eventually, though, as the young monkeys grew older and saw how good life was for the monkeys living up in the trees, they decided life in the pit wasn’t for them after all. They each started to climb, a little at a time. They reached small ledges along the walls of the pit, gradually working their way higher and higher. They climbed at different rates, but called out to one another, helping each other as they could. Some monkey friends from the trees reached out and helped them each as well, but when it came to it, they had to each climb their own way out of the pit.

One by one, they each made it to the ground. They scattered, some to enjoy life at this new height, others to try to find a way into the trees from there. One little monkey lay panting on the ground, contemplating the trees, wanting desperately to join them. But it had taken so much strength just to get to the ground.

So she looked back at the pit. It was not a wistful look, not a nostalgic look, but simply a contemplative one. Sometimes she still believed that was where she was supposed to be, the only place she was fit for – that the trees were no place for the likes of her. But when she looked at how deep the bottom of the pit was, she was proud of how far she’d come.

Then she heard voices from above. “What are you doing down there?” “Why are you on the ground?” “That’s too low. That’s no fit place for a monkey.”

She glanced down into the pit again. Then she picked up a fallen piece of fruit nearby, for energy. It was so fresh! Freshly fallen, and so much better than the rotting fruit and slimy bugs of the pit! Nourished, she reached out and slowly, carefully, flexing muscles she’d never used in her life, started to pull herself up to the lowest branch of the nearest tree.

It wasn’t easy. She had never been in a tree before. All her climbing experience was based on scaling the lumpy walls of the disgusting pit. She was so proud of herself for reaching the ground! But the monkeys in the treetops weren’t. All they saw was that she was too far down still.

Some bark managed to work its way between her mangy fur and scratch at her. Her fingers and muscles ached from the effort. But finally, eventually, she made it to the lowest branch. She collapsed on it, exhausted.

“What are you doing?” the voices from above called again. “Why are you all the way down there? Don’t stop!”

“It’s so hard,” she called back, nearly a whisper. “Don’t you understand? I’ve climbed so far.”

“No, that’s not far, that’s still down at the ground! Monkeys aren’t made to be at the ground, they’re made to be in the treetops!”

“I know, but they’re just so far away.”

“Oh, don’t be silly! It’s easy to get up here! I’ve been doing it my whole life!”

“But I got scratched up.”

“That’s because your fur is separated. You should’ve groomed first. Why haven’t you groomed?”

But she didn’t know how. A tear rolled down her cheek as she looked back, toward the pit, wondering why it was so hard to go so far. The other monkeys seemed to think the treetops were so easy to reach! Maybe she really wasn’t made for the trees. Maybe she didn’t deserve them after all.

Then another voice, much closer, called out to her. “Please don’t worry, sister. They don’t understand. They’ve never been in the pit, and to them this is still too near ground, too near the mud and the filth. They don’t know how hard climbing is when you didn’t spend your whole life already doing it. But don’t worry, your muscles will grow and you’ll be able to climb higher.”

She smiled. And she rested where she needed to, passing the time by studying grooming techniques or contemplating the branches above and considering how to get to them. Other monkeys may already know these things, almost instinctively, but she didn’t. She had to learn.

Maybe the monkeys in the top branches couldn’t understand, but she was glad to have someone who knew that what looked like bottom to them, wasn’t the bottom at all. They just couldn’t know how far she had already come.

Small, Manageable Tasks

Wow, it’s been a while since I’ve posted! I actually regularly “write” new posts in my mind, but time gets away from me and they don’t always make it into actual writing.

But lately I’ve been rather overwhelmed trying to get my new house organized. I try to break it down to smaller things to organize, but sometimes it’s all I can do to make sure that my floors, dishes, and laundry are clean. That’s what’s primarily required for my children to have a better house than I grew up in, and sometimes that’s almost too much, too overwhelming for me. But essential, of course.

So I made a little stick figure picture of what it feels like when people advise me to break things down into smaller tasks. I imagine the person on the left is what those smaller tasks must feel like to them, and thus their advice comes from a good and reasonable place. The person on the right is what many tasks (especially organizing and getting rid of things–in the sense of still being afraid of the consequences of getting rid of something someone else wants to keep or thinks we should have kept, even though I know consciously that it’s my choice now not theirs) feel like to me even after being broken down.

Judgments

It’s so easy to be so judgmental. I do it. I know other people do it too.

Contrary to what our culture often seems to say, judgments aren’t always a bad thing. You have to use good judgment to determine whether a place is safe to be, whether you need to get out of a bad relationship, whether someone is trying to scam you. Sometimes there’s a fine line between using good judgment to avoid a bad situation, or just being judgmental in a racist way, in a sexist way, in a generally profiling way, or whatever else.

But right now I’m talking about the latter kind of judgments–the ones that are making assumptions about other people.

See, I see pictures like this:

or this:

and it makes my blood boil. (Figuratively, of course.)

I actually tend to be fairly conservative, politically speaking. But generalizations that becomes stereotypes really bother me.

See, we have very little money. We do have some government assistance. We have as little as we can help having, but we have some. We could probably have more if we sought it, but we won’t do that because our goal is to get off assistance, not to acquire more of it.

But we also have a smartphone. Why? Because my husband needs it for his job. And I’m getting a tablet. Why? Because one tablet is cheaper than the cost to fix or reasonably replace my laptop–especially since we found it with deals.

We also use our food-oriented government assistance toward buying things that are as healthful as we can get. We budget it throughout the month, and yes, occasionally we splurge and get some ice cream or something. And what assistance we get is in addition to, not instead of, income through a job.

I know people who have EBT and are very smart shoppers who buy designer labels second-hand or at steep discounts. I know people who are on WIC and qualify for state-sponsored health insurance and yet have very nice manicures and pedicures and stylish haircuts–ones that they’ve done themselves or their friends have done for them. Or ones they gotten at heavy discounts because they were willing to go to a beauty school and let the students practice on them.

I have also known people who are on EBT or WIC or state health insurance who do not manage these things well and, yes, maybe spend a lot of money on junk. And I’ve known people who do not qualify for any such things but use their money poorly, wasting it on every new gadget or whatever other whim they might have and then not having money to pay their bills.

Growing up, we didn’t qualify for EBT. We didn’t have state health insurance. We were far from rich, but we had a lot more money than I thought we had. Our cupboards and fridge sometimes looked like the left side of the first meme, and sometimes closer to the right side. I think I’ve written about that before, but it’s not really my point today. My point is that there are a lot of different possibilities–those who have more money but use it so poorly they might as well not; those who have more money deprive themselves even of things that others would consider needs, to the extent that they might as well not even have money; those who have very little money but use it so frugally that they can, through discounts and second-hand shopping and such, they don’t appear to not have money; and those who have very little money and happily live on the provisions of others, misusing government assistance that’s provided by the tax money of others and writing it off with a watch-out-for-number-one, “Hey, it’s there, I might as well use it” type attitude.

All I’m saying is, sometimes we get a really good deal on something that seems way too expensive for us, and I’m afraid to even tell people. I see so many memes in my Facebook newsfeed like the ones I posted above that, after a lifetime of feeling the need to keep a “perfect” appearance to homelife that has translated into my current homelife despite being significantly better than how I grew up, I fear being judged by people who care more about the appearance that we’ve overspent than about the explanation of how we didn’t.

Which boils down to this: I fear being judged. Why? I don’t know. It shouldn’t matter. It shouldn’t matter what other people think. But, particularly in matters of finances and housekeeping, I’m extremely sensitive to what others think. I want them to see me as fully capable and responsible. More than that, as I said, I spent all my growing-up years trying to put on a good face and make things look like they were better than they were. But the fact is, if you have nothing and look like you have nothing, people will judge you for having nothing. If you have nothing and look like you have a lot, people will judge you for looking like you have a lot. If you, in fact, DO have a lot, people will judge you for having a lot.

People will judge you no matter what. So my three goals right now are these:
1. Be open and honest so people can see that what I have isn’t necessarily the result of misspending.
2. Don’t care how people judge me as long as I know I’ve done my best to be responsible and to be honest.
3. Don’t judge others in the way I don’t like to be judged.

 

A Job Doing . . . What?

Talked to my mother on the phone yesterday. Somewhere in there, she threw in, “Oh, by the way, pray for me, I have a job interview Monday.”

“Where, doing what?”

“Well, you know the person who comes to visit your sister and help her out…”

And then my mind was blown.

See, my sister and my brother–the two who still live near my parents–have continued struggles with hoarding. Well, I think we all do in one way or another. But that particular sister, even when utterly disgusted by my parents’ house, has essentially admitted that she doesn’t care if her house is a level 1 or level 2 hoarding house, but she freaks out and cleans furiously if it gets to a level 3. Now, to me, I don’t want my house to class as a hoarding house at all. A level 1 barely classes, but a level 2? No. Not okay to me. (For more about hoarding levels, see here.)

But that same brother and sister have each done something with their own homes that my parents never did: they sought help. They have people from a particular organization come help them with . . . organization. (Why are those the same word? That’s confusing.) These visitors (different visitors for each sibling, I believe) help them get rid of things they don’t need to keep. They help them generally have a better house than we grew up in.

And this is the job my mother wants and has an interview for tomorrow.

Say what?

But in me there’s a person who always wants to believe the best of everyone when it’s at all possible. A person who firmly believes people can change, and that said change is only made more difficult by others assuming that the person won’t change and treating them as though they haven’t changed even when they have.

And there’s this personal scenario that keeps running back through my brain. See, a couple years ago when we lived with a friend, I hadn’t even wanted to move in with him because, while I was trying hard to learn how to keep a house better, I wasn’t there yet. (I’m still not 100% there yet, but way closer.) But he was my husband’s friend, my husband discussed this with him and he said he didn’t care, and he really needed roommates to help with rent until he got married. So we moved in.

I tried. I tried very hard. And I grew, and I learned. But I still look back on that year (slightly less, actually) with guilt and shame. For one thing, whenever I wasn’t there yet for whatever reason–depression hitting again and I just didn’t care, or I really was trying but was still in the learning curve of how to manage the various things, or whatever else–it wasn’t just our friend who was affected. His fiancee frequently came to visit. His parents occasionally came. And of course we had our own visitors as well, but at least we knew when they were coming. I felt awful when our friend had visitors. I wanted so much to explain to them–even just to explain to him–that I knew this wasn’t a good way for the house to be, that I was trying really hard to not keep it that way but it was so unnatural for me and I’d never been taught how to, that I really was growing and changing and getting better at keeping up with the house but it took such a long time that it was hard to see unless you’d known me for a couple of years.

He was a very easy-going guy. He really never seemed to mind. But I’m fairly certain his fiancee did. And I know for a fact that at least two other friends of ours did–one of whom essentially cut off our friendship for many reasons, but a starting point to the ending conversation was pertaining to the cleanliness of the house, how we’d packed and cleaned while moving, etc. In other words, how the house was while we were there (living in most of the house, with our friend actually living mostly in his room) was affecting, not just us, not just our friend, but many other people as well.

And I have this recurring fear that one of those people affected by that will come to our current home and see that I’ve improved even more, and rather than rejoicing with me over how much more I’ve learned about keeping a clean house and encouraging me as I continue to learn, that they might instead say (or at least think), “Why couldn’t she do this twgo years ago? Why was that house so messy and now she’s actually taking responsibility?”

It’s something similar to various other things I’ve experienced. About correcting the grammar of others, about interrupting people, or in my brother’s case, about irresponsibility. I’ve realized that no matter how you work to change these things, a lot of people will continue to treat you as though that’s who you still are. No matter how many years you’ve been making a point of, say, not correcting the grammar of others, some people will still treat you like you do it every time anyone else speaks.

And that’s what I do NOT want to do to my mother. For one thing, my father is really the hoarder. My mother acquires the traits of those she’s around, absorbs those traits as long as she’s around those people. Therefore, with over 30 years of marriage behind them, she’s absorbed certain of my father’s traits, including the tendency toward hoarding. But left entirely to her own devices, she’s not naturally a hoarder. She’s not much of a housekeeper either, but she can do some things.

But the other thing is, their current apartment, as of the last time I was there (admittedly a couple months ago), was actually being kept in a fairly reasonable state. I mean, my husband is still allergic to it because of mold spores long-since settled into the furniture. My mother spoke of needing to sweep the floor as though it was a rare occurrence that needed doing only because my son got popcorn on the floor, even though I (who hate shoes) refused to walk barefoot in there because the floor was so gross. And I am fully aware that they have about half a houseful of useless stuff packed away in storage somewhere. Boxes of papers they don’t need and such. But still, there weren’t other things on the floor. There was miraculously no cat mess. There were actual floors, not just narrow pathways through large rooms. The dishes, though still not what I would consider well washed, were at least washed and put away.

No, my mother never taught me how to clean or organize. But then, she was working full time and the only driver in the family, and I was only one of five children. My father was home with us full time. The responsibility for teaching us should have fallen to him.

And no, my mother never kept a very clean house. But again, she was working full time. At least some of that responsibility should have fallen to my father.

I have never felt any real connection with my mother. Never in my entire memory, and I have memories from when I was about 18 months. But I’m realizing more and more how much should have been my father’s responsibility that, whether due to physical health or mental health or just his own laziness (and I’m convinced it was a combination of all three), he did not take responsibility for. So right now, I’m just holding out hope that my mother sees how she failed us growing up (not entirely of her own doing), and she wants this job to help others avoid the life that we had. Well, at least the physical household. The yelling and blaming and neglect are something she can’t fix by helping others get organized, but maybe she hopes to at least teach others what she failed to teach her children.

But I have to admit, as much as I hope that’s true, I’m much more inclined to believe that it is as my sister said: “She wins at denial.”

Just a Story

The following is just a story. A true story. But not one with any significant point. And yet I feel there is some significance to it, and the conversations have been rolling around in my head for days. So I thought I’d post it here in the hopes of maybe figuring out (maybe not today, but eventually) what the significance in my head is.

My mother was here to visit the other day.

“Can I do some dishes for you?”

“Um, if you want to. You don’t have to.”

“Well, I just figured it’s something I could do to help you out.”

I appreciated that. So she did some dishes for me. Filled the dish drainer (I probably could have fit more in there, but she filled it about as much as my husband usually does, so I guess I kind of overstuff it) and then said, “It would drive me nuts to have such a small dish drainer.”

“Well, they didn’t have any bigger ones at Walmart.”

“Yeah, but what did I always have?” That’s her teacher rhetoric coming out. Or maybe just the way she talks. I don’t know, she started teaching before I was born so I have nothing to compare it to.

“Um . . . a bigger one?”

“No, I always had two, one that I kept next to the sink and one that I kept in one side of the sink. I don’t have it anymore because–well, frankly, because I don’t need it anymore. But that’s what I always had.”

“Seriously? Always? I don’t remember that.”

“Well, since you were 6 or 7 anyway.”

I have no memory of this. None. I remember dirty dishes in both sides of the sink, all over the counter, and on the floor. I do not remember even being introduced to the idea of a dish drainer in one side of the sink until I was out of college and living in an apartment attached to a friend’s house. That friend keeps a dish drainer in the sink rather than on the counter to the side. I thought it was a cool idea when I saw that she does it that way, since it keeps more counter space, but when I tested it out in my own life I didn’t like doing dishes that way. But that is honestly the first memory I have of a dish drainer in a sink instead of next to it.

So I asked my oldest sister. The real irony here being that she and I have had many conversations about how much I remember vs. how little she remembers. But she remembers two dish drainers. She also remembers the sink being so piled with dishes that the second drainer couldn’t be seen, so that second drainer was kind of useless anyway. But she remembers. I have no memory of it.

Later, after my mom had left, I started putting away the dishes she had piled in the empty side of the sink. I’ve considered getting a second dish drainer for that side of the sink, in case there are a lot of dishes to do and I need the extra space. But when that happens, I usually either spread a towel on the table, or I sanitize the other side of the sink and just put the clean dishes in there. And now my toddler likes to stand on a stool at that side of the sink with a dish pan of clean water to rinse dishes in after I’ve washed them, so it’s even less likely that a second drainer would get used.

But as I was examining dishes (about half of which went back to be rewashed–I will never understand how my mother can miss so many spots of food and grease) I thought about this again, wondered if she had sanitized that side of the sink (or even given it a quick wash with dish soap) before piling [relatively] clean dishes in it . . . and found myself thinking that maybe a second dish drainer could be useful after all. (And all dishes that were actually touching the sink went to be washed again.)

More Than the Diagnosis

“Wow, you’re a bit OCD, huh?”

No. I am not OCD. Any more than I “am” PTSD. How can one BE a disorder? I have OCD, PTSD, and dysthymic disorder. They affect who I am, but do not define me.

So I’ve been thinking about a few other, similar things lately. I often say my parents are hoarders. Particularly my father–I’m fairly well convinced that my mother hoards by association wit h my father and her tendency to pick up what those around her do, rather than any personal inclination.

Now, looking at this logically and realistically, since they’ve never admitted it or done much about it, they sort of do let it define them. They have not chosen to rise above it, to be more than it. But at the same time, they are more than hoarders–in both positive and negative ways, but more, at any rate.

So I’m going to try to start saying that my parents have Compulsive Hoarding Disorder, rather than that they are hoarders. At least my father does. My mother . . . well, again, it’s a little up in the air whether she has it or whether she’s just absorbing the behavior of my father. But they both certainly have depression (that they see in each other but won’t acknowledge in themselves so they don’t seek help for it) and that’s another way I need to change my terminology. They have depression.

Because, for my own sake, for my own healing, no matter how much I think I may have forgiven them for various things, I don’t think I really have if I continue to define them by their disorders, conditions, etc. I don’t want to be defined by the conditions I have, and I don’t want to define other people by the conditions they have either.

So I am me, and they are them. And these conditions and disorders and such? They’re things we have to choose to deal with, each individually. But they are not who we are.

On Slavery, Child Abuse, and being a COH

I would like to offer a disclaimer at the beginning of this: I do NOT believe that being a COH is equivalent to being a slave or to major child abuse. That is to say, it could be equivalent, but it all varies case by case. My case was what I consider “boarderline abuse.” That is to say, I would be reluctant to call it abuse, but it was pretty stinkin’ close. Technically, I think it classes as emotional abuse and neglect, but I still have a hard time calling it that. At any rate, it certainly isn’t the same thing as, say, Dave in A Child Called It, or an abused prisoner of war. Chains of the past that are hard to be released from vary in origin, strength, and even in their effect on various people depending on their personalities and how they react to circumstances. But the extreme chains of one doesn’t negate the lesser-but-still-present chains of another.

For various reasons (mostly related to sci-fi–yeah, that’s my brain) I started thinking about slavery earlier. I was thinking of Teal’c from Stargate: SG-1, who was born into a slave race and fought to escape that slavery, then fought against the slavers to free the rest of his people. Yet it took him a very very long time to trust his new friends he was fighting with, and even well into the series he had a hard time asking for help with personal matters, even though he would offer ideas and happily work with them in professional matters. And this got me thinking of how hard it must be for a former slave, especially one born into slavery, to ever feel “equal” with anyone else, even his friends. If they weren’t also in slavery, I suspect the freed slave may forever feel substandard, though his friends would never (at least never intentionally) do anything to make him feel that way.

I was actually thinking of writing a story involving this element, and as I wrote down a short conversation to later include in the story (if ever I have a surrounding story to go with this brief concept) I realized something very significant: I feel like this too. No matter how kind someone is, no matter how loving, no matter how they confess their faults to me, I never feel like I’m “equal” or “good enough” when I’m around my friends. I mean, a lot of people often have a sense that everyone else has it more “together” than they do. But it’s more than that. I have this sense of being on a slightly lower plane of existence–like I’ve managed to raise up to a higher plane of existence than I was ever on before, but still never as high as those around me. Like I’m incapable of reaching that plateau. Like I’m forever pulled down to a lower level.

Despite my frustrations when my mother-in-law is helping me–which are not based on her help, but my own feelings of failure–I still feel very comforted when she’s around. I feel like she’s a comforting and calming presence, an anchor of sorts.

My sister told me the same thing tonight about her own mother-in-law. And we agreed that we don’t feel that with our mother. In fact, I had two days with my mother-in-law here followed by one day with my own mother here last week, and the difference was drastic. I could talk to my mother, joke with her, but almost the same as I could with a relative stranger. I lack a connection with her, and what connection I really feel is negative. I feel like her very presence, even when she’s here helping me rearrange bookshelves and get more organized (yes, she apparently can actually do that!) is somehow pulling me down to a lower plane. But when my mother-in-law is here it’s like she gives me a temporary free pass to that higher plane that I’m never actually allowed to live on. I never feel like I belong there, but I can at least be there for a short time and have a respite from the stuffy lower altitudes.

And I’m sure it’s the same with abused children. And with slaves. And prisoners of war. And anyone else in such a situation. maybe it’s a PTSD thing overall, or maybe it’s something else. I don’t know. But I know that if I’m ever talking to someone who was in any such situation, though our experiences will certainly differ and though they may be dwelling on lower planes or have a harder struggle to get up with more chains weighing them down, I do know this: I may not be able to identify with everything they’ve been through, but I’ll certainly identify with that particular feeling.

People love to point out–to me, or just in things they share on Facebook–that you are responsible for your own actions and your actions are not the fault of your past. Even when it’s a generic image shared on Facebook, I always feel like that sentiment is being shot at me like a very insulting arrow. Which is funny, because I do actually believe it. But I feel like people get so caught up on that that they ignore the fact that your past does, in fact, affect how you react to things. If I’m cruel to someone, that’s my choice. If I neglect my son, that’s my choice. If I ignore my house and do nothing to contribute to my family’s comfort and well-being, that’s my choice. But if I experienced these things in my life, they will certainly make those choices much harder. If you’ve been given an example of the wrong thing your whole life in one area and the right thing your whole life in another area, doing the right thing in BOTH areas is your choice, but in which area do you think it will be a harder choice?

So yes, if I use my PTSD (which I’ve only recently realized is almost entirely related to cleaning–how strange that the simple matter of how to clean is the area I react as the most “abused”) as an excuse not to clean, that’s a cop-out. But if I struggle with doing the right thing, keeping a clean and healthy environment for my family and teaching my son how to clean, because I was never given that example growing up, that’s legitimate. The point is, however hard it is, I made my choice–my choice is to fight.

Now I just need to figure out how to choose to believe that I really am equal with others, even if I don’t have a perfect house.