Friday, August 2, 2013

The cost of logic

This was discussed the other day with my counselor, and I realized, its probably something that people don't know as much about.

Sometimes, there are specific triggers, that hit my mind, and I lose the ability to process. This makes sense. It breaks my ability to process, because instead there's this other stuff taking over.

But, in particular, the idea of someone acting in a negative mood and telling me they're not, at the same time, breaks me. It takes all of what's going on in my head and crunches it up and says NO. And then I need to get as far away from people as possible.

Because, you see, what this is doing is saying that every bit of the things I've built up for how to understand people are WRONG. People are not trustworthy, and not only that, my brain's understanding of them isn't trustworthy. I can't trust my own sense of what's going on. Everything is wrong, and I can't understand it. I can't be near it until I have managed to sort it out, figure out what's true, and what's false, and piece it back together. Until people are people, and truth is truth, and lies are lies, and my sense of what's going on is trust worthy.

When I'm interacting with people, I'm not doing so intuitively. I'm analyzing it. I'm analyzing it all. So, when my analyzation has been broken, been told its wrong, I don't have intuition to fall back on. And that's what happens. The analyzing requires the ability to trust the analyzing. And when the analyzing has been told its its innately wrong, then how can I trust it? I need to reset it. To tell it, that no. It's correct.

And until that point, people are absolutely terrifying, because I have no sense of what they are doing, or why. Without my analyzing, I don't know what's going on, and without knowing, its scary. So I want to be as far away from people as I can. So I run, and I hide. Because they scare me because I don't know if they'll hurt me. I have no way to get reassurance they won't. Someone who is coming to hurt me, and someone who's coming to reassure me, and someone who's just being neutral are the same at that point. They're all to be avoided, to make sure to avoid the person who'd hurt me, whether they'd hurt me purposefully or by mistake.

And then, I rebuild, and I wait, until something else is too much. And it'll happen, because I can't just take everything. But when I break, its not just being frustrated, its more than that.

Noise

Reading, wanting to communicate, struggling to get ideas out. Okay, I'll sit down and write. I can do this now. It's a way to get ideas out. I can explain how I feel and how I live.

Right, I have stuff to do on this topic. That's a specific thing to do. Explaining about how life is harsh, and you can't just always focus on how you cope, because if you do that then you deny what people deal with.

Writing. Starting to get in the right mode. I can do this. It's starting to work. I've been stuck not managing to do this for months, but its starting to work now.

Type type. type type. type type.

People coming up and trying get me to do other stuff, interrupting all my thoughts. Losing it. Losing it all again. Don't want to lose it.

Please, let me keep the right mindset. Please. Wrapping up. Curling up. Smaller, smaller. Pulling in.

Walking away, realizing they were interrupting me, maybe kept it, back to trying. Writing quick ideas down to remember thoughts.

RING RING

Stupid phone.

SQUAWK

Too much noise.

Talking. So much talking. Squawking. Squawk squawk. Thoughts are running away. They're leaving.

Getting harder to string ideas together. Can communicate well enough to make people think I'm functioning, but mentally I'm lost. Anything I want to do is gone.

All the noises. Too many noises.

Clenching up. Don't want to hear it all.

Feel like I'm going to burst.

Want to just manage to do something effective. Why can't I be effective?

Bark bark bark bark

Even more. Why more?

Holding head. Typing. More headache.

Questions? I'm supposed to answer questions? Right, yes I can do that.

I'm going to just hide now. Maybe the noise will stop eventually.

Rock rock. rock rock

Thursday, June 6, 2013

People Not Listening

When communicating is already hard, people not listening rips at it.

When searching for words to say takes a lot, people not believing the words, or trying to put words in your mouth, makes it even more of a struggle to say anything.

When initiating saying anything takes so much, people not taking it into account says its not worth trying.

When its so hard to get people to listen, it rips at emotional scars. It rips at a lifetime of people pushing for normalcy. It rips at people not being accepting. It rips at being hurt over and over again because of being who you are.

It rips at doing everything you can and being the best you can be, and being told that its not good enough.

They just won't listen.

They just won't listen to you saying "let me get help my way, not yours"; "I have my needs, not yours"; "my body is not the same as your"; "This hurts"; "Help, please" or "Leave me alone, please".

They just won't listen.

Because your words aren't what they expect to hear. They're not given in the way they're expected. They're not the words they expect.

And because they're not what they expect, they aren't taken as seriously. Because expectations matter.

So, sometimes, people who have communication impairments end up being better communicators, because they actually listen. Because they realize that not everyone communicates the same way. Because they have to know that. Because they've lived it too.

They've lived the downsides.

They know that people don't always listen.

But why does it have to hurt so much?

Monday, April 29, 2013

Neurodiversity [and disability]

There was a post on wrongplanet asking about neurodiversity and disability. Are they mutually exclusive? How do they relate?

And really, looking at how people talk about it, it doesn't seem like people understand disability as part of neurodiversity.

So I responded. I responded the following:

Neurodiversity is about saying that disability doesn't mean lesser.

I am disabled. I am not a lesser person because of my disability. I cannot do everything that others can. I will never be able to. I will always have needs that others will not. I will always be disabled and not just different.

But that doesn't mean that I'm not good enough. It doesn't mean that I'm not human. It doesn't mean I'm less than someone who's not disabled. It doesn't mean that I need to be cured.

It means that I'm a disabled person.

And neurodiversity means embracing those differences. All of them. Disabled or not. It means saying that someone who needs to read to learn and someone who need to listen to learn both matter. It means someone who can't see a florescent light without getting a migraine matters. It means that someone who needs to use tools to remember what they're doing day to day matters. It means someone who doesn't know how to interact socially matters. It means that we're all people.

It means that disability isn't being broken. It means that disability isn't being wrong.

But its a concept larger than disability.

It means that being different isn't being wrong. Disabled or not.

That's what it means to me.

I'm disabled. I'm not less than someone who's not. I'm just me.

And people agreed. And people disagreed. People either said that high functioning autistic people weren't disabled, or they liked what I said.

But disability is what it comes down to. And its a scary word. And it doesn't have to be a scary word. An neurodiversity is saying its not a scary word.

I am not capable of the same things others are. I just cannot do things others can. This is not a question. This is just a statement. There are things I cannot do. There are major things I cannot do. The fact that its not a big deal doesn't matter. The fact that there's a lot I can do doesn't matter. The fact that I work around it doesn't matter. There are things I can't do.

That's what disability means - that there are things you are limited in doing or can't do. Not that you can't do anything. Not that you aren't good enough. None of that. I am disabled. I am disabled by the same stuff that calls me autistic. By the stuff that makes me deal with a sensory system most people can't imagine, and by the stuff that makes my nonverbal communication a mess.

But neurodiversity says I'm good despite that. Neurodiversity says I'm not wrong. Neurodiversity says embrace those differences because differences are good, even if it means I'm disabled. Disability isn't wrong . I might not be capable of everything. But I'm capable of enough.

I'm capable of being happy. I'm capable of enjoying life. I'm capable of making a difference. Sure, I need help. Sure I'm not capable of everything that's normal. That doesn't matter. I'm not a lesser human despite that. I don't need "fixed". I don't need pitied.

I need helped. I need accepted. I need treated like another person, and a person who's needs aren't the same as everyone else's. I need acknowledged. I need to be me not someone else.

So yes, I'm disabled. But accept me anyways. I'm not broken. I'm just disabled. And disability doesn't have to be scary.

Tuesday, February 26, 2013

Tinted Lenses and Irlen Syndrome

I've had so many posts I've been wanting to make and have been not managing to get the words down. However, this post is a straightforward one.

At some point last year through some of the Sensory Processing Disorder people I heard of people using tinted lenses. Some of them also mentioned Irlen Syndrome, and we were going through the self-tests and commenting about how many of the criteria on the self-tests we meet. I meet almost all of them for headaches or light sensitivity, and in the long form, more than 3 in some of the other sections as well.

There is an Irlen center somewhat local to me, and I contacted them asking costs for everything over the summer. They gave me costs (which I don't remember the numbers of), and mentioned that November 1st they were going to be training people as Irlen screeners, and that if I wanted to be a person used as an example for them to learn on, then I could be screened for free.

So, November 1st I was screened for Irlen Syndrome. The screening process was quite interesting. I ended up in major overload and not being able to function for multiple days after it because of how much sensory overload I was in because of it though. They were nice and skipped over some sections when they wouldn't give them any information (i.e. We know she reacts poorly to florescent lights if she has such strong self reports and reports that from her occupational therapist so strongly, lets not test it here in order to try to not put her in overload as long as possible). Lots of what they did was purposefully putting visually difficult patterns and having me look at them and trying to cause visual distortions to come up - such as a penguin made up of Xs, or a drawing of a cube split unevenly.

My screening came back as expected saying that yes I did have Irlen Syndrome, so they then went and figured out what overlay color would help me. We went through different overlays and combinations of overlays until we figured out that aqua + aqua + grey was what would help me the most so they sent me home with that combination.

They agreed that tinted lenses would be really helpful to me - that they'd do far more for me than overlay would, so it was then a question of getting to tinted lenses. Going through the Irlen Center would cost money, we could do it cheaper than that...

You can dye polycarbonate (and other plastics) with synthetic fabric dyes. So we bought Blue and black dyes) and set out trying to get frames. Ended up trying to get rimless frames because we could try to do more ourselves with rimless frames, but we kept messing up trying to make lenses.

Last Tuesday we managed to dye a piece of plastic to the color of blue that I wanted my lenses to be dyed to. Later in the week we went to the optometrist, got other frames (thus if you try this route, don't go rimless they can't use rimless with tinted matching always), gave them the match, and told me I'd get my lenses Monday or Tuesday.

Yesterday at 2 pm (after I wrote most of this up actually) I picked them up! They still need adjusted for fit a bit, because I want them to be crooked in a particular manner to make them crooked with my face. It shouldn't be a hard adjustment now that I figured out what I want (I wasn't managing to explain there what I was wanting so we got them to comfortable and visibly level, and considered that good, now I've figured out what I was wanting).

Jonored is looking at possibly making blinders for the side if I have issues with peripheral vision and them, a few different possible materials have been looked at. I really like the idea of removable blinders, but I don't want to add on to his projects if he doesn't have time, so its currently an "if it becomes necessary, and let him think about how he wants to do it" thing. It'll probably happen though.

Anyways, I've definitely noticed they've helped. I'm going to after a while of wearing them go through and figure out in what areas are they helping. So far I know they're helping with florescent lights at least to some degree in particular and overall helping.

Wednesday, January 9, 2013

Communication difficulties

It's getting harder to communicate. I don't know how much is my meds, how much is stress, but its getting harder to communicate.

It's harder to find words that I'm looking for. I end up rambling trying to find what I'm trying to say. My sentences are ending up long winded and harder to follow.

Jonored is finding it hard to understand my speech patterns now, because of the stop and go patterns, combined with the sentences getting longer. Sometimes they get too long to keep a single sentence in his head at once, unless I stop and plan the entire thing out before I start speaking.

At the same time as this, a lot more frequently, its just feeling not quite natural to speak, and at times to communicate by words at all. If I actually think about it in these states its not even hard, it just, doesn't feel right.

The part that's actually getting to me, is the fact that its getting harder to write too. I will go and have ideas and I'll want to put them down, and I can't get them out of my head. They feel trapped, making me feel trapped.

I think its a combination of both. I'm trying to figure out ways to compensate. The topamax is helping with my headaches, but when we went from 100 mg to 150 mg a day the side effects jumped drastically. At the same time, my stress level, and the amount of stress I'm around is possibly making that worse. I don't know. Jonored and I are talking about me asking about reducing my med dosage back to 100 mg when I see my neurologist again, because this is getting really hard on both of us. Maybe as I'm on this dosage longer it'll get easier? It's been a while though.

Monday, December 10, 2012

Autistic

December 1st the committee agreed on the final version of the DSM-5; in May 2013, the DSM-5 will be published.

One of the most talked about changes from the DSM-IV to the DSM-5 has been in autism - they're changing it so that instead of having the separate diagnoses of classic autism, and Asperger's and PDD-NOS, they just have the diagnosis of Autism Spectrum Disorder, with severity levels. People have been felt very strongly about this, argued about it a lot, and now, as of December 1st, its finalized, the diagnosis in the DSM-5 will in fact be Autism Spectrum Disorder.

I've been incredibly supportive of this change, and have been using the word autistic, specifying my diagnosis is Asperger's for a while. Now, we're all just autistic. This is better for the stigma for everyone on the spectrum to me - people are more individuals now. Yes, there are subtypes. But the subtypes aren't "Asperger's" vs "Classic Autism" - that split isn't a very meaningful one, and they are talking about taking into account details of individuals for people's diagnoses.

Will everything be the best it can be? No, but it should be better than it was.

I started using the word "autistic" to refer to myself instead of "aspie" for a few reasons including:

  • Inclusion of the entire spectrum, caring about what everyone on the spectrum wants, and general disability rights
  • Relating to what people elsewhere on the spectrum describe - including nonverbal people
  • Having issues with stereotypes of Asperger's; I am neither active-but-odd, nor NVLD, and people treat me as such, using "autistic but speaking on time" actually has people treat me better than "Asperger's

For me, the DSM-5 is a better description. I'm clearly a case of Asperger's, but I'm also passive, not active-but-odd. As it is, we'll have to see what actually happens. It's been too talked to really know what it is at at the moment. Likely, not much will change.

Tuesday, September 11, 2012

Everyone grows up faster than me

I've felt like this before, like people grow up, and like I don't, and I get left behind. I don't know how to adjust to adult life. When I was younger, I was known for being particularly mature, now, as a young adult, I feel trapped between being a child and an adult, where other people my age are making this transition, and I'm stuck behind, unable to follow.

I don't know how to take care of myself. I don't know how to do things that others find simple. As I've been getting older, my challenges have been becoming more apparent, because being in school was easy for me, but this isn't. And watching around me, other people aren't having this. They went through, they had discomfort as a teenager, they are still not entirely settled as young adults, but they are settling into adult life, getting jobs, and taking care of themselves. They're growing up.

I'm not. I'm stuck here. And I'm left behind.

I've felt left behind here at a few points in the past - I didn't grow up the same as other already. I really miss my friends from high school. They grew up before me. They grew up when they went to college in ways I didn't, and when they made new friends, I only found jonored, and when they started jobs, I hadn't, and they're ahead of me in life.

And now jonored's interviewing, and I'm terrified. He knows this about me, he knows about my impairments, we've been working on me being less dependent on him, but I'm scared, because he's growing up in ways that I'm not too, just like everyone else has. I have to trust him to not leave me behind. I trust him, I trust him to pull me along, going to work and coming home to me, having us work on my ability to work at the pace I can manage (which is currently volunteering one day a week at a school that I want to write about - I'm volunteering at a school for children on the autistic spectrum).

I don't know what to do here as everyone else around me grows up to an adult life and I'm only dragged along behind because I'm not capable of doing everything they are.

Sunday, June 10, 2012

I don't want to be cured (and that's not because of privilege)

The argument about whether autism should be cured is one that really frustrates me. People on both sides tend to talk in absolutes, about how its entirely wrong for anyone to want to be cured, or about how nobody would want to be cured. Both sides are silly and extreme. It entirely seems to be something where some people will want to be cured, and others won't, where if a cure existed and people could choose to have autism removed, without pressure from others to require it, it would be reasonable. Like the people against a cure, I'm scared of the possibilities associated with one - I'm scared that a cure would be forced on people, or that people would be even more discriminated against for choosing to not suddenly have a large part of them changed. I'm scared that people who are already treated as being incompetent wouldn't be given the chance to say what they want. I'm scared that someone who's nonverbal wouldn't be given a choice.

Really, that's what it comes down to for me, is that people should be able to choose for themselves; not people choosing to make life easier for others, not people choosing to make everyone the same - people should be able to choose what they want for themselves.

Which sets the scene for where this post came from. People were once again arguing online about whether a cure should exist or not. Generally I stay out of these discussions, but this one was getting more unreasonable, effectively claiming that its wrong to ask for people to treat a nonverbal little boy as a human instead of an empty husk, and saying that anyone who's really impaired would want to be cured.

The truth is, that there are people at all "functioning levels" (though I dislike the phrase) who don't want to be cured and who do want to be cured. There are people who can "pass" without much effort on their part who would be some of the first to jump on a cure, and there are nonverbal people who don't want a cure and who will write about this. Knowing this, I had to explain. I have issues with not responding to people online when they seem actually misinformed, especially because of wanting to make sure that others don't become misinformed. This was a situation where it didn't seem like others would, but I still had to respond.

So I responded, and then thought it'd be relevant to write about here.

There are a few different reasons why people don't want to be cured. Most, if not everything, I've read describes multiple of four main reasons why people don't want to be cured

They don't want to have to relearn how to live life without autism.
Autism is part of them, and has shaped their entire life up until this point. Removing that means they'd have to near completely have to relearn how to live as a neurotypical person. The amount that would need to be relearned is often entirely forgotten or at least underestimated.
They have a strong sense of self identity
Their self identity in this case includes their autism, and they don't want to change themselves, but instead work around their issues. They want to get better at coping with the challenges, but they explicitly want to do that without removing them, because autism is part of themselves.
They want to succeed specifically as a disabled person
They want to succeed, even in a minor way, and share their abilities, as a potentially severely disabled person. There are people who are nonverbal who want to share their stories and have people learn about their abilities, about what they can do, about what they can do for others, without speaking. Doing this while nonverbal is about more than themselves, is about more than autism, and is about more than disability as a whole; its about people and how we judge each other and how we treat people based off of that judgement. Having those disabilities can make it easier to show people weaknesses they have and strengths others have. Some people value sharing that more than removing the struggles of their life.
They are happy as they are.
This seems like something that doesn't need to be stated, yet it seems to need to be stated. People can in fact be disabled and happy.

Of course this won't include everyone on autistic spectrum, but it is a solid subset of the autistic community, even once you've limited the community to those which would be legally disabled. Not everyone wants to be cured.

So to those who argue that because they want a cure everyone who is "really disabled" does, there is nothing wrong with you for personally wanting to be cured. There is something wrong with you saying that others always have the same preferences that you do. It can be hard to learn that others have different preferences than you do. It took me until my teens to really understand this - that it wasn't that other people were pretending to not like things that I liked and pretending to like things I didn't (beyond things like food), but eventually I learned. These people, those who don't want to be cured, including some of us with Asperger's, some with speech delays, some without the ability to speak, do not have the same preferences as you do. They do not think in the same manner that you do. They are still disabled; they are still struggling with things far beyond many people's comprehension; despite this, they would choose to remain disabled when given the choice.

I personally am among that group. I have impairments with verbal communication (I remember being taught in speech therapy how to use tone of voice to ask a question along with the other speech therapy that I remember all through elementary and middle school (as well as 10th grade); I will go nonverbal for hours at a time if triggered; I don't know how to discuss emotions or how to answer questions about how I feel; I can't always communicate what I'm trying to say.) I have impairments with non-verbal communication (and often feel like I have "positive" and "negative" for what I can read on people's faces). I am socially inept, and am still finding out more and more how bad I actually am at this. My hand-eye coordination is bad enough that people have literally made a drinking game out of betting how terrible me and one other person will do at video games (they're the ones who would theoretically be drinking, we're just that bad to start, its hilarious) and have had people at times think I am actually faking. I have severe sensory issues, beyond what most people realize occurs. I cannot drive and never will be able to. I cannot take care of my one bedroom apartment on my own (and am really lucky that my boyfriend is entirely comfortable doing the parts I can't, because cleaning a bathroom isn't an option for me). I am applying for SSI for disability because every professional who's attempted to help me find a job has told me that either I should apply or that they just have no clue how to help me. I am without question disabled.

Yet, don't want to be cured. If I was given the option of removing my sensory issues, I'd almost certainly deny it (though I would ask for my migraines to be removed). If I was given the option of removing all of my ASD the question would be even simplier, there is no way that I'd make the decision to not be autistic. My reasoning personally falls into all four of the above areas.

My Asperger's doesn't make me unhappy. Certainly it makes me have to deal with things that will make me unhappy that other's don't have to, but it doesn't make me unhappy. I can't say I'm always happy. I'm human, I deal with problems that I don't want to mention on things like this forum that will make me unhappy, but overall, I know that my life isn't bad, and I know that I can get through the periods of time that I'm unhappy and get back to my default optimistic, happy, autistic self.

How I go about my daily life is absolutely dependent on my ASD, both in things I avoid, and in things I do. It would be far more difficult than people realize to have to relearn how to do things as complete as how to do dishes and those activities people take for granted.

I have an incredibly strong sense of self identity. I am Tuttle. My asperger's is part of me. I am autistic. I am me.

And something that I've only recently learned - my ASD has given me abilities because of the impairments. I don't mean despite the impairments. I don't mean that I got random gifts with it , I mean the impairments themselves are along with impairments, abilities that others don't have. The fact that I can't walk to the grocery store (a quarter mile away), and back without disassociating if its night time is not a good thing. It's not a gift. And yet, having to deal with that, knowing I deal with that, and sharing that I deal with that, has given me the ability to affect other's lives in positive ways that someone without that would be unable to do. People who disassociate for entirely other reasons have been able to learn from me. Professionals are able to tell parents things that their children are dealing with, such that the parents can change their actions to ones that aren't problematic for their child. People can learn. People can change. People can have happier lives, whether or not they are autistic, because of my impairments. How could I, personally, say that I'd take my life being easier, not necessarily any better, but easier, in exchange for not being able to continue learning, and continue sharing, and continue helping others because of these challenges? How could I say that I'd take my life being easier in exchange for other people's lives being less pleasant? It's not something I could do.

Not everyone is called to that. Not everyone has that manifestation of autism. Not everyone is called to put others before themselves to the point where it is actually likely a weakness. Not everyone has the interest in determining what they about themselves, and using that to share information with others that they didn't necessarily have. But some of us are. And the fact that we are impaired, the fact that we are disabled, the fact that some of the people I've read blogs of are nonverbal, does not change that part of us, the part that would choose a hardship for ourselves for the ability to make a difference in improving others lives.

When you really think about it, any cure would be a question of trade-offs. A majority would sacrifice some abilities that are associated with autism for those associated with being neurotypical. (There are known things that autistic individuals do better - for example processing visual data, autistic people still notice things out of place that they're not explicitly told to look for when there is more data that they're purposefully looking at while neurotypical people will not.) All except making people actually process information the same and just have better coping capabilities would lead to people needing to relearn self care skills. All would require choices of changing oneself.

It's a trade-off. It's a reasonable question for individuals to have their own answers to. In my case, I don't want to be cured, and that's not because of me not having reason that would lead others to make a different decision, its because I'm me and this is my decision.

Thursday, June 7, 2012

Sensory issues, or some of what it takes to walk down a city street

Walking down the street, you likely notice that cars are going by, the smells of the restaurants, the smell of cigarette smoke from the people smoking on the side walk. You likely see lights at things like crosswalks and on the cars. You likely are somewhat aware of what you're walking on. But its generally simple. There are things you like and things you don't like, and you will go towards things you prefer and away from things you prefer to avoid. When you can't avoid it, you'll likely be unhappy, but it won't be a big deal, you can get away soon enough. Things tend to be noticeable, but don't rule your life.

At least, this is what people tell me. Their descriptions vary, but generally it comes down to, there is a norm for sensory input, that involves all senses functioning, senses regulated, and the sensory input not needing to be the focus of something as simple as walking down the street.

I say "this is what people tell me", because this isn't what life is to me. This isn't what walking down the street is to me. I actually can't even imagine it. I can't imagine that little input noticed; I can't imagine things affecting me that little; I can't imagine it being that simple.

People notice the cars, the sirens when they go by, the noise of everyday city life. However, I don't just notice these. They completely overwhelm me. An ambulance going by will, at times, literally freeze me in my tracks. A car revving or a loud motorcycle will do the same. In order to keep walking, in order to not just get so overwhelmed I can't function, I'll dig my fingernails into my palms. I'll fidget with things, clench my hands, start signing things I want to say to people when I get to where I'm going. I'll wear earplugs (though not always, because they itch in my ears). When breaks screech its an attack on my ears. It physically hurts. My muscles tense up, headaches are worse, it just hurts. When I get to where I'm going I'm still on edge from the constant bombardment that is city life, and that's just the sounds.

The smells, those are so much worse. People who know me at all know this one at least. Those smells that are offensive to others are migraine triggers to me. Those smells that others dislike, I'm fighting to keep from vomiting from. Those smells that others don't even notice, they do the same. Walking down the street, you smell cigarette smoke as you pass someone smoking, but apparently most people don't smell it when they're half a block downwind from anyone smoking. I struggle to have people realize that my reactions aren't just psychosomatic, as they don't realize anyone can smell things the way I do. And the smells, they're too much too. The headaches, the nausea, the attempting to breath properly, that's normal. That's everyday. Being looked at strangely for wearing a mask when I'm walking down Main Street, or waiting for a bus; having parents pull their children away from me; having people randomly take pictures of me because they're not used to someone wearing a cloak and face mask walking around downtown - those vary in frequency, but only the random photograph is something that was so infrequent as to phase me. And that mask that people treat me differently when I'm wearing, its amazing. It lets me walk all the way to city hall without starting to get a migraine (though not all the way to the library across the park). It's amazing to have a full 15 minutes of walking down Main Street without beginning to develop a migraine. That's three times as long as I normally would get without the mask, and that's huge. People realize that dumpsters smell bad, and that sometimes people smell bad, and that tends to be something they understand can trigger the nausea, but walking quickly or on the other side of the street is (apparently) usually enough. The strange looks, the constant fighting of headaches, the planning my schedules around the smells, actively avoiding some buses and never going on those routes, planning when I walk and when I bus based off of how many people are riding vs walking vs taking smoke breaks, that's my life.

And those lights, those lights people see, those can be blinding. Those can make me unable to process what's around me until I've regained the ability to process. Those can make me, and often do make me, disassociate. All of the light, the sun, the headlights, the streetlights, everything, can make it so I can't even process the "walk" sign, especially when I'm being overloaded in other senses. Luckily I can function from 'don't walk when its orange' or 'walk when the sounds meant for blind people are chirping', but it still comes down to not being able to visually process certain details at times. When I say that I don't think it'll ever be safe for me to drive, people tend to underestimate what I'm saying. Walking down the street at night, if I was not terrified of cars, would likely be unsafe. People's descriptions of being blinded by the high beams on a car confuse me a lot. I don't understand what they mean by those being high beams, the lightest low beams are like that. What do they mean that the low beams give them light and the high beams are blinding? And that's before the disassociation. If its night time, I can rarely even walk home from the grocery store a quarter mile away without disassociating. It's like I split into multiple parts, and can't do more than execute the program of "walk home avoiding cars". I'm glad that other people on the sidewalk notice people, because I've almost walked into people often in this state (and only notice it after the fact). I already need to plan when I'm going to the grocery store around the smells, and now that we're adding lights in, walking home once its dark gets overwhelming. And yet, that's the easy option. For me its easier to deal with regular disassociation, to find ways to work around the fact that the lights are so bright that it hurts, that I can't see properly, and that I can't even be all together, than it is to deal with everything else if I avoided that. It'd be even easier to avoid the grocery store, but I need to eat somehow.

Now add on to all those sounds and smells and sights that you notice, noticing all those details (except, ironically, those that people expect you to notice on people.) That's not just a hand telling you to not walk, that's a lot of little lights, and they're not all working, some are out. The post is rusting and the trees behind it aren't just trees, they're full of leaves, which aren't all the same colors even within a leaf. And those disgusting smells, they're not just one smell, there are all these parts of various types of trash and various types of decomposition. And every little bump on the sidewalk is there, the new trash that you feel terrible walking by after people have thrown out of their vehicles, the dead animals at the side of the road. It's all there. You see it all, you hear it all, you smell it all. You don't see only a road scene, you see everything in that, and process it all.

And that's just being on the street. Not even walking yet. Because once you get to walking there's movement of your body. And because that body doesn't process everything normally, there's stumbling and being generally clumsy. I've mentioned before sensory issues to some degree, and mentioned this then. But that's not always acceptable. Sometimes people are expected to wear things other than shoes with toes (for some strange reason), and because trying to get a job is more important than a sprained ankle, shoes for interviews go ahead and cause walking down the street to cause sudden twisting of an ankle because of not being able to feel what's going on underfoot. I'm still dealing with my ankle being in pain after last Friday, and I've not even gotten to interview with anyone, just had to wear the silly shoes to prove to people I could dress professionally.

The sights, the smells, the sounds of the street. Walking and having to deal with processing information and not hurting yourself. If you ignore the weather, and assume everything on you is comfortable, despite even "comfortable" clothing being too much at times, then for the 5 senses people normally think of you can get from point A to point B (as taste is not very relevant for walking down a street).

But that's only the start of this. That's only the start of having unusual sensory processing in the ways that I do. Because that suggests once you're off the street that things are easier. That suggests that the vestibular and propioceptive senses don't exist. That suggests that only hypersensitivities exist, not hyposensitivities, not seeking this input to regulate oneself, not difficulty planning motor actions, or difficulty discriminating between different sensory inputs. That suggests that input can be dealt with and ignores it being overwhelming, breaking all ability to function, even after its gone. That suggests that removing input is all that's needed and ignores that even once the input is removed the recovery still takes time, and during all of that time there's extreme sensitivity to everything else, including non-sensory. Not to mention, while it certainly does a lot and certainly more is removable than people immediately think of, there's only so much input you can remove and still be able to get to a doctor when you need to and when you can't drive.

And this is my life. This constant overload. This constant bombardment of sensory inputs attacking me from all sides. My body not knowing how to habituate to anything going on, so hearing every tick that clock makes that others tune out. My body hyper-tasting and yet still craving strong foods (but only some, only my choice). My body having poor sense of where its joints are, and not being able to walk straight without vision. My mouth still at times having a hard time pronouncing words that I should know how to do, and my hands having such a horrible time at video games that people make drinking games over watching people like me play them. My body dealing with everything until it can't take any more, and it shuts down, doesn't let me speak, doesn't let me move, doesn't let me even get away from known migraine triggers at times. Or instead, losing control of my mind and snapping at people and sobbing, because the fire alarm has been beeping for a new battery longer than I can take.

Not only is this my life, this has always been my life, I didn't know some of this was abnormal until this past year, and this will likely always be my life, because while therapy helps and new coping mechanisms help, how I perceive the world is just different than normal people see it.

Simply dealing with what's around you, even ignoring the people, is so much, that I can't understand how people are surprised when a child throws themself to the ground screaming, unable to cope. Simply dealing with everything is so much, that I can't expect how people overlook it all. Simply dealing with everything is so much that I have no clue what its like for it to be simple.

They say it is. But its not for me.