Making Space for Mental Illness

I have anxiety and depression. 

I am also autistic, acutely asthmatic, have a chronic pain condition, and most likely one or more autoimmune conditions. I have learned over the years how to give my body grace for it’s many symptoms. 

I know for instance, that if I wheeze when I stand up, I have to take it easy and avoid chemical triggers, if my fatigue makes me want to cry that I need to rest until it lets up, if I am sensory overwhelmed or unable to speak to withdraw from stimulus and to fill my day with sensory pleasing activities as well as self regulating stims, and if my body is on fire with pain to be still and treat it as best I can.

I have learned through trial and error that trying to bull through these symptoms will only cause my overall health to spiral. There is no use in being in denial, or pushing through unless I have no choice. It only hurts me….and if I am in a self recriminating mindset, it makes me less productive too. 

I have a lot more difficulty being gracious with my self about my anxiety and depression. Once these two show up I tend to fall into a pattern of negative self talk and fighting myself to try and force these feelings away. 

I understand why, my family history of weaponized mental illness plus internalized saneism and ableism that taught me practically from birth how to be ashamed of my feelings, but not how to process or deal with them. 

Here I am, a breath away from 41(i think) and still struggling with how to treat my mental illness with as much grace as I have learned to give the rest of my body/self. I want to change this, I want to lovingly embrace these parts of me that are not inherently wrong, are not defective, which is only my inherent me-ness plus the imprint a lifetime of othering and toxic familial relationships left on that base shape.  A perfectly fine mix of strengths and weaknesses. 

So now I am trying to change that, I want to give my body the grace to work through it’s emotional symptoms as I do it’s “physical” symptoms. I’ll be honest, I don’t really know what that looks like. I’ve never even imagined what it might look like to not struggle under the weight of this internalized saneism and ableism. 

I don’t know…but I think the first step is in letting myself feel my feelings without the internal dialogue telling myself what a useless waste I am for being terrified or depressed all the time. I think for me the first step is allowing these feelings pass over me as another aspect of me. Not for attention, or excuses(because privileged people should never use our mental illness as an excuse for our oppressive behaviour), not to wallow in them self servingly, but because denying them and trying to shout them down is never going to work. 

I feel like there must be a middle road for me between denial and drowning in them.

Because denial has never worked foe me. It’s time to try some semi-radical self acceptance. Hopefully some day, as I am able to work through this, a next step will become clear. 

Hopefully some day, I will be able to breathe a little easier. 

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I Salem, Partially Nonverbal

Layer by Layer

My experience of being nonverbal is only my own, it may or may not be similar to other autistic and neurodivergent experiences. 

We are not a monolith.

I’ve been thinking a lot lately, about the myriad ways I experience inability to use verbal language for communication. It has led me to want to peel these layers like an onion, to fully examine them. 

I’ve spent my entire life being told by most people, that I am a bad friend, lover, or family member. That because I am to flakey, because I only see them when it suits me, because I don’t know how to reciprocate love and friendship my connection is worthless. It has caused many hurt feelings and broken hearts over the years, both others and mine. 

So perhaps a manual for my self at least…and perhaps it will help others understand that we communicate as best we can, that just because we show love differently that doesn’t mean it was not or is not there. That it is ok for others to not be able to be engaged with the way we love, communicate, or connect. But if a body is able to see us, our love, affection, and companionship is like the ocean, deep, mysterious, sometimes still as glass, but absolutely always there.

1. Passive Emergent Nonverbal – 

This is my default setting more or less unless I am particularly stress free or able to self/medicate my anxiety effectively. 

in this setting, i am entirely unable to reach out to people outside of my regular routine. I usually don’t struggle with what or how to say things in this layer. this is not social anxiety, it detours away from how or what, long before I can get to self flagellation street. During these longer and longer phases I am prone to mild disassociated states which may make me socially passive with people inside the safe schedule of routine, familiarity, and family as well. I may have difficulty with the back and forth flow of conversation, get lost in words, or forget common words like elevator or that one i can’t remember right now that describes a particular feeling of unease. 

My writing will have more skips, more repeated sentiments, more echolalia wording, more awkward sentences, and sentences that eat their own tail..also more visual analogies roughly tranlated into allistic English. I  will more often miss things, am likely to struggle with brain fog as well, and lose track of my train of thought…like I just did. 

But I’m usually aware of feelings of sadness and isolation, and am receptive to verbal communication if a conversational template I understand is presented to me. 

2) Broad spectrum Nonverbal- In these instances I can not communicate at all with words, except with trusted people whom I know can speak this language of English words translated to pictures and translated back into broad stroke synonymous words. This level is often but not always triggered by autistic burnout, panic attacks, or long term high level anxiety for me. People’s response to this can exacerbate or loosen up words depending on whether it is met with understanding or confrontation. 

3) Nope No Written Words Either – This level is, for me, often but not always paired with the second level. It is fairly self explanatory and means I have the same difficulty with written communication as i do verbal. This includes receptive language like reading and auditory language understanding. 

4) Short Term Complete – For me this is usually caused by panic attacks or trauma. During these periods I may be entirely incapable of any communication, or I may only be able to communicate through limited gestures or even just nods and head shaking. Certain soothing stims or familiar trusted people and rituals (or resolution of the anxiety) will usually slowly bring my ability to communicate back at least somewhat.

5) Long Term Complete – During these times I have no words of my own. If I have to communicate with other humans it is often extremely minimal amd entirely echolalia scripted. My word bank feels asleep or in stasis rather than clamped shut. For me this can be caused by trauma, autistic burnout or conversely a soothing routine in which I do not have to communicate with people regularly.

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Now it is important to note that as a partially verbal or selectively mute autistic person i do hold a position relatively privileged. There are autistic people who are unable or unwilling to speak, or use word based communication at all and those people are 1 million percent valid too.


Just because they/we can not verify their/our feelings and connections through words, it does not mean those feelings and connections are not there. 

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cn: *eye contact*, implied nudity

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[image description: a heavily filtered sparkly but disjointed close up of me, a white nonbinary transmasculine person, in the bath, head on knee, looking at camera, during a period of being nonverbal] 

Friday Morning Reflections

It’s 8:56 am. My children are all gathered watching the new season of Magic School Bus. The teenagers orbit around the edge of the room pretending they are less invested than they are. The sun streams warmly in the window…for now it isn’t giving me a headache. My pain levels are tolerable, what ever that means. Milton will be home soon. My social network ebbs and flows, as they do. For now I do not feel like a burden. It’s peaceful. 

Yesterday we got several pieces of bad news, two of which could have long term negative impacts on our lives. My pain is better right now but my asthma is much worse. I had every intention of writing a lot for autistic acceptance month but autistic burn out has left me struggling to frame thoughts in words at all, much less once or twice a week. I stayed up late last night worrying. My nesting partner is worried as well, depressed and frustrated. We’re both frustrated. exhausted. 

But right now these children are happy, we are fed, we have a home, and all is well. well enough. 

We don’t need or want anyone’s pity, no saucer eyed proclemations of “you’re so brave”. We work impossibly hard for these little moments. We just want to enjoy them, to have the ability to rest now and then. We want to live. It shouldn’t be this hard. 

but it is.

Rest 

Coping in the Meantime

Winter is a hard lean time for many chronically ill and disabled people, for many environmental, physical, and personal reasons. It’s no longer the depth of winter in this part of the sphere we call home but that doesn’t necessarily mean all of us are magically better. 

Boom. I wish. 

Season changes can be a difficult time for many of us as well for many different reasons. For some people rapid weather changes can impact their pain levels, cause loss of mobility, aggravate secondary or co-morbid conditions, or cause chronic illness flares when we are already in a weakened and depleted condition, adding days or weeks to our recuperation time. 

Even if enviromental changes don’t aggravate our conditions, our recuperation times are often painfully slow, we may be treading water in a limbo of slight relative improvement even by our own personal standards for much longer than we can really bear. Spending days or weeks feeling better, but knowing that sense of “better” is to delicate and new to have any practical function can be exceedingly frustrating. 

So here I am in the long weeks of feeling better…but not really better. Since this winter, when I caught a cold that kicked off a domino effect of asthma, pain, and chronic illness flares, I have been a ghost in my own home.   Borrowing against future spoons just to function at parental survival level, keeping my kids fully cared for while my partner was at work and only existing in a pain and brain fog stupor when he was home. 

so now things are a little better, my pains have faded a bit to tolerable dull moan, plus a constant full body “restless leg” irritability, as well as daily (rather than constant), sharp pains of joints not lining up right or generally not working quite as they should. My fatigue has faded from unable to function at all unless under duress to constantly exhausted, mildly foggy, and grumpy. I am so tired right this second, my shoulders feel resentful that they have to persist in being held higher than my feet. so tired. I am living in pea soup and I know it. I want out. 

This is overall a big improvement except the fact that most of my relatively freed resources are just enough for me to have more time and energy to think about my ever growing to do list. The pressure feels monumental to get everything I haven’t been able to do for months, done now. Spring cleaning, entertaining and enriching bored toddlers with cabin fever, homeschool, starting a business with very little in terms of network or resources, trying to make new revenue streams so we can maybe live under a little less pressure, careful budgeting of spoons so that I don’t lengthen my recuperation time out of obstinance, and internalized ableism always lurking behind my right ear with it’s insistent whisper of “not enough” always make this time of year extra frustrating for me. 

So here I am reminding myself, and you too if need be

That it is ok. 

If all we have to give right now is 20%, 20% is 100%,because that is all we’ve got right now. 

That there is never anything wrong with giving what we have to give. There is never anything shameful about not having more to give, *even* if we may have it to give at a later date or in a different environment. 

Today we can only offer what we have today

Let’s try and be a little easier on ourselves for not yet having future energy or ability in stock today. 

I know it is a process, I won’t be able to change my thinking immediately and that is ok as well, but I’m going to work on it. Learning to forgive myself for not being able to do the impossible is as important as learning to not hold the impossible against other people. 

Today is not Tomorrow, and that is ok. 

Repeat until we believe it. 

Otters and Other Mythical Creatures

I think about otters

no one forces an otter 

otters are just otters

otters just live

————-

I think about living a life with out the sweaty milk sacks 

now that’s poetry. 

milk sacks. spigots.

I’ve got a million euphemisms 

let’s just tone that gendered term down friend 

soften the blow a bit

they have given life though

nurtured life

power, grace, and magic irrefutable

I am thankful for this gift

even as I am being dragged kicking and screaming into your 50’s house wife fantasy.

*I Do Not Consent To This!*

I scream into the void 

but no one is listening 

or no one cares

*I do not consent to this body* I whisper

small.desperate. an eternity of tired

still

The entire world leans in

cheerful.helpful.

and offers me a cough drop and half of a flat soda.  

forever missing the point

When We Aren’t Socially Acceptable Disabled People Anymore

Our American white colonizer culture loves a plucky underdog story. We swoon over stoic suffering. We adore an inspiring boot strap story about a person who overcomes great adversity to succeed in an emotionally satisfying mainstream way. 

But what happens when our suffering isn’t sexy and silent? When we aren’t productive “enough”? What happens when we aren’t getting better? When we struggle, flailing, desperate for some sort of support? What happens when we don’t know how to reach out or build the “right” sort of connection? 

I’m far from the first person to ask these questions. 

As disabled people we are given both more room to be imperfect, and listened to more intently, the more intersections of privilege we hold. That means that I get more room and grace from the abled people around me than my disabled peers who carry intersections of oppression I do not. It should be common knowledge that IBPOC, especially black non-men are given no room in our dominant white culture to be human, to struggle. This lack of acknowledgement doesn’t end or magically disappear with the disability community. We are not absolved of our racism or anti-blackness because of our, or their, proximity to disability.  This is something that we white disabled people should never forget or gloss over. 

How does this cultural expectation for graceful silent suffering impact me personally? It’s isolating. 

I don’t know who or how to talk to people anymore. I lack a conversational template for reaching out to casual friends. When my social role seems to be support person or advice giver as far as I can tell most of the time? When everyone misgenders me as older woman, team mom if you will, and we all know what moms are for. How to talk to people when all I have is sadness and negative self image to talk about? who wants that? who can I subject to the pain of standing next to me while I drag them down. 

Even knowing that isn’t an accurate assessment of the situation, how to undo a lifetime of being told that my expression of feelings or discomfort were an undue burden on the people around me, exhausting, vampiric, a sign of my inherent weakness? 

I don’t really have an answer. I know I am struggling. I know I have said all this before. I know it is difficult for me to let my guard down and let people in, that it is equally hard for me to feel worthy of or safe with letting others see or carry any of my pain. I know that it is my normal to feel like this in the winter when I’m so sick and not even able to go out for errands, as my already small life shrinks further. 

But I also know that if I can’t do it for myself, my children, nesting partner, and beloved connections do not deserve to be solely taxed by my emotional luggage when I’m unable to carry it on my own anymore. 

That means learning to feel more safe with vulnerability, I think…or something like that. It means…It means continuing to dismantle the internalized ableism in my head that tells me that I am not worthy of life or love if I am not able to be productive. It means pushing myself to keep struggling at growing and being even when I want to curl up in a ball forever. 

It means I deserve to live. 

It means you do too. 

Reframed

I used to think my sick body was a weak body

for the way it shook, burned, throbbed, and trembled

how I cursed it’s every inconsistency

how I sobbed and railed and wailed 

at my body’s failure to do as I saw fit and proper

/\/\/\/\/\/\/\/\/\

yet here I am years later 

thriving despite

inspite 

because of

/\/\/\/\/\/\/\/\/\/\/\/\/\

and so a dawning of sorts

a realization 

my sick body is a strong body

a persistent body 

an empowered body 

my body screams to live 

trembles in its effort to continue 

burns to live a day in love 

my body shakes with will to live

we shall not stop

not today

not tomorrow 

for this body is a strong body