Showing posts with label misunderstanding. Show all posts
Showing posts with label misunderstanding. Show all posts

Monday, April 13, 2015

Taking caring of me my own way

I cannot make the decisions you make. I'm glad you take care of yourself. I'm glad you stop and say that you need to. I need to take care of myself too.

I need to take care of myself my way. I need to take care of myself as the person who if I stopped when you did, I'd not do anything, and that wouldn't be something I could manage either. I need to take care of myself as someone who needs to stop for things you cannot imagine. I need to take care of myself as the person who needs to push myself to the limit every day, both because I need to for my own sake and because my body doesn't give me a choice.

I cannot do things the way you can. I cannot leave everything when I get a migraine. I am glad you do. I will recommend to everyone to do it that way. Do not look down on me for doing differently. Do not tell me that my stuff is less severe. Do not tell me that what I'm dealing with isn't really a migraine, or isn't really a challenge, or isn't really "bad". I need to do it this way. This is my way.

I am glad you have the choice of doing something different. I am glad you can leave when every migraine hits. I am glad you can take care of yourself and protect yourself. I do not have the luxury of both leaving and facing the world. I would rather face the world. I would rather push myself to my limit. I would rather roll around a building in a rolly chair unable to stand; I would rather type in an AAC app on my phone; I would rather use a long cane; I'd rather find weird ways of doing something that people don't think of than leave and not let myself manage what I am capable of. That is my way of dealing. It is my appropriate way.

I cannot do everything your way. I cannot take days off work every time I deal with the pain of a pinched nerve. I cannot use ibuprofen to deal. I apply peppermint and cope. It doesn't mean I'm not in pain because I am managing. It is my way. I am glad you choose your way. Your way is better for you. Because I can manage, does not mean you can or should. You should do what is appropriate for you. You also should not minimize what I deal with.

I cannot do things your way. I cannot buy a car and drive myself home from work no matter how many times I'm told I should. It would not be safe. I cannot simply organize all the things to get myself a meal amidst all the noises of a home. I need to take care of myself in my own ways, in all of what that means.

My communication is different; my sensing is different; my pain is different. My need to push through is different. My need to find alternative ways to find a way in a world. So I do it. This doesn't mean I think you need to. It doesn't mean I'm dealing with nothing either.

I'm glad you can step away when its too much. My "too much" has to be different, though. I need to find ways. I need to do things oddly, and I need to say, what's good for you isn't good for me, and what's good for me isn't good for you.

I need to take care of myself, and do things my way, whatever that might entail.

Wednesday, April 1, 2015

Listen

When someone speaks, or types, or flaps their hands, listen. When someone tells you what they need to get through the day, or when someone tells you that they can't handle what is happening, then listen. When someone tells you that they don't mind who they are, that they actually are rather happy, then listen. When someone asks for acceptance, please, listen.

How many times do these things need to be said? Shouldn't it be straightforward for someone to say "Hey, I rather like who I am" and to have people take this seriously. Or to have someone say "maybe it'd be easier for both of us if you just play the music quieter", and for people to do this.

Wouldn't it make sense for people to be able to have thoughts about themselves? And wouldn't it make sense to pay attention to all the communication, whether or not it is spoken?

I don't know, it seems straightforward to me. But, it seems that people don't know how to listen.

It seems that they don't know what is around to hear and what is around not to. That there is communication outside speech seems to be a challenge to understand, and learning how to read it takes time; yet at the same time there is an expectation of normal social cues. That there are voices speaking out saying "please, listen to me, I want to speak about my own disorder", is lost, and they don't find them or hear them; and when the few get through, its drowned out in their expectations of what they already understand to be their truth.

So maybe, its a process, and maybe its the first step. Learning to listen.
So, that's what I ask. Can you try to do that? Learn how to listen.
And then, listen to people who are autistic.
What do they say?
It won't all be agreement.
It won't all be the same.
But there will be people talking out about themselves, what they like, what they don't like, what they want, and how they feel. And they should be listened to.

Myself?
I want to be able to be me without feeling like I'm fighting people every day by existing.
I want people to notice when I need help, and offer it.
I want to be respected, rather than spoken over because of who I am.
I want to thrive.
And I want to find my way in the world.

Tuesday, January 14, 2014

Being articulate...

You're so articulate. You communicate so well.

People see these as compliments. They are compliments. They don't see the other side of them though, the struggle, the fact that, while being articulate, that's not always there, its only about what can be communicated about. They don't see that they only see what gets out, not what stays in.

People can realize that someone who's nonverbal has a challenge communicating to the world. They at least frequently don't understand what it is, or how it feels like, but that there is one. People tend to be very sight-centric and voice-centric, and push everything around those two things, so when you cannot speak, you are not communicating. In truth, someone who isn't speaking might be communicating, and someone who is speaking, also struggles.

You read my posts explaining how I am, I'm articulate. I communicate well. That's what people keep telling me.

But what about when people keep asking what I want to do, and even if I know something, its such an undefined concept in my mind, I can't figure out how to speak it. And I try to, and it gets confused and scrambled, and I get unable to understand what's going on. And people around me start getting impatient, wanting an answer, because I'm taking a long time to answer a simple question. But its not a simple question, its something that takes figuring out an answer, sorting through the details, converting it into words, filtering the words to speech, and talking. And its confusing to go through that when its forced instead of natural. And then eventually, I probably say "I don't know", because at that point I have no clue, even if I had an idea in the first place. And it likely is quiet, because my voice won't let me speak very loud.

That's fine. That's just not knowing what I want to do. But its going through and trying to deal with this mental stages of communication, that I have to go through in order to communicate when its not natural. I deal with both, natural, when I just know what to do, and unnatural, where I have to concentrate and figure out how to convert thoughts into words, and it takes time.

People usually only see the former. They don't believe the latter exists.

They don't see me crying in bed, trying to explain things, but it just being so difficult to deal with that I'm withdrawing, and crying, because crying makes it easier to cope.

They don't see week after week of trying to get the same idea across, and the problem being me, not being able to get the ideas that make so much sense in my head, to come out in words that make sense.

They don't see me explaining how to do things to people, and leaving out half the explanation as I'm mentally sorting through everything.

They don't see, that every time I go to a doctor, I end up with not having the doctor understand some of my symptoms, because I can't get them explained in words.

Words are hard. Using them, converting to them, struggling to get ideas out, when only a small fraction of the idea is coming every time you speak.

But then, it is enough. You're called articulate. Praised on how well you communicate. Told you can't understand what its like to struggle with communicating with speech.

And you go back, and try again. Maybe eventually, ideas will get through enough for others to understand. Maybe eventually, words will find their way, and it won't be stuck with needing to cling instead of use words because words are too confusing and too overwhelming. Maybe eventually, the words that come out will be ones that are understood by those around you. Maybe eventually.

Until then, its time to just keep trying to figure out ways to get thoughts onto the page, if its repeating the ideas, if its writing them, or if its clinging when needed.

And hoping, that maybe people will understand, that you can both be articulate, and struggle at the same time.

Sunday, December 8, 2013

The relationship between chronic pain and abnormal sensory processing

People don't often understand chronic pain - they think they do, they've dealt with pain, but generalizing from an ache and pain here or a headache there to pain being a constant part of your life, that it partially shapes your life. This pain isn't just there, its constantly there, and its not only constantly there, its what determines what life you're living.

The thing about this pain - this pain that is constantly there - or at least one thing, is that you can't stop for it. One of the privileges of not having chronic pain is the ability to stop because of pain, and it being the proper thing to do. When you don't have chronic pain, its not only acceptable, it is appropriate and right to stop when you've pushed yourself so far that you're hurting. It is wrong to keep going when you've caused pain when you can set it aside and finish it tomorrow, unless its extreme circumstances.

When there's chronic pain, you don't have this luxury. You don't have the option of stopping because of pain. You don't have the option of saying it hurts today I'll do this tomorrow, because it hurts tomorrow too, and the day after that, and so on. There are questions of trying to manage pain, and trying to not overdo it, but pain is no longer an excuse, pain is no longer a reason to stop going today unless the pain will be unmanageable tomorrow, pain is no longer a reason you can say that you can't do something now.

When someone has a bad headache they can take painkillers and say they can't do the grocery shopping today. When someone with chronic pain has to do the grocery shopping, they need to do the shopping. They might rearrange what they are picking up so that they're walking the shortest path, or such that they're not carrying any heavy items, but they still need to eat. Pain is no longer a reason to put off the shopping.

So, when it comes to abnormal sensory processing, the same types of things hold. Except that most people don't ever even get the headaches in the first place. Most people don't even get the equivalents of twinges of pain. They don't need to say that things are too much, they don't need to say they can't cope with things, they don't need to find to ways to cope with things that are going on around them. They never feel pain, except they never get any of the downsides of not feeling pain.

And then there are some people who have to cope with headaches and aches and pains. There are people who if you push them to far, or if they push themselves too far will respond with pain. They will sometimes wake up in pain without a good reason, and will need to react with pain killer equivalents and saying that today they can't do the grocery shopping. We need to be accepting of this. We need to let these people do what they need. These people are the equivalents of people who get headaches in a world of people without pain receptors.

Except, there's a level above that as well. There are the people with chronic pain. There are the people who no longer can say no, I can't do that today. There are the people who have to just keep going even though it hurts, even though the world is at constant war with their body and their body is at constant war with itself. They no longer have the option to say its too much, because its always too much, or that its not enough, because its never enough, or that its not right, because its never right. They always have to fight to make it as best they can, and as best they can is always still pain, and always still more than most people deal with, or can ever imagine dealing with.

These things affect people, and the lack of understand can too. Treating people right matters a whole lot. Remember that people can't always say no. Remember that not saying no doesn't make it easy. Remember that these people who are saying that their bodies are processing things differently mean it - when they're saying that it hurts and they can't take it today that they mean it, and remember that those of us who no longer can say that and who have to just try to grin it and bear it and the chronic pain it causes have to do that too. Please.

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.