Love and Living in Flaresville

Love and Living in Flaresville

I recently had a revelation of sorts.

You see, I struggle, during flares with my self worth. Self Loathing slowly eats at my mental health until I am am emotional sobbing puddle of despair…especially during the long deep winter flares. 

My friends, many of whom are also disabled and/or chronically ill are always quick to assure me that my productivity doesn’t make or break my value which I totally agree with and yet was not helping the emotional hole in my heart space. 

But I think I figured that piece out. 

My mother was always very open about the fact that she had me in order to make sure she had someone to love her no matter what, to take care of her between lovers, and when she was old and alone. This is not a good reason to have a baby, and is certainly not a healthy thing to raise your child up telling them constantly. but tell me she did. She always made it abundantly clear that my reason for drawing breath, was to care for her, and by extension people like her. 

Loving her, loving people, caring for people was one of the only things I ever got positive reinforcement for as a young autistic trans person.  

My mother was a lot of things to me, she did a lot of things she shouldn’t have as a caregiver, but one thing she did, for good or ill, was make me very good at taking care of people. 

Or at least I was.  

*que personal crisis* 

The way that I was able to “earn” a place in peer groups as a young, autistic person who didn’t meet anyone’s gender performance expectations, was through caregiving. They were willing to tolerate my neurodiversity, only when I had performed that role sufficiently.…or so it seemed to me. 

Not every relationship I’ve ever had has been that dynamic of course. I’m certainly not a victim, and have made plenty of my own mistakes over the years. I spent years in a little soft boy weaponized sadness toxic entitlement smog. It did not look good on me. 

But it was enough of a pattern for my baby autistic brain to imprint on that mold, to develop expectations of myself as an especially effective caregiver. 

The trouble comes in over the last couple years, as I have increasingly become unable to take care of myself, much less anyone else. Every single spoon I have, and more than a few I do not have, go towards navigating a massive amount of pain, new symptoms, fatigue, executive dysfunction, severe depression, and did mention pain? As well as caring for my children, trying to work as much as possible so my family can hopefully some day not be in constant financial crisis, and hopefully not being an emotional drain to the people I love. 

Especially during flare season, a combination of autistic burnout, anxiety, fatigue, and shame related to my inability to reach out or properly or actively reciprocate social interaction on any level adds to my physical inability to leave the house making a deep isolation soup I have trouble escaping. 

I get caught in a feedback loop, when I so desperately need human companionship in which I don’t feel like I deserve to ask for the emotional labor and support of others, when I know my ability to reciprocate that emotional labor and support will be spotty at best for many months out of every year. How can I ask people to do for me, what I am probably incapable of doing for them, most times? 

The process of figuring out who it is appropriate for me to ask for emotional support and labor from can be days or even weeks long. Most of my friends are also disabled and/or chronically ill and are similarly struggling, especially in the winter months. I can’t put my never ending emotional suck on them. Then the educating people on aspects of my family’s experience can be moee draining than help so while I deeply appreciate the offer when I need it most I am unlikely to be able to reach out to an ally. Then many  of my friends who share my identities and would get my experience are also marginalized in ways I am not, I am not entitled to their emotional labor, they have heavy enough existence dealing with this oppressive shit storm world, they categorically do not need my despair added to that. 

even when people offer their support, if I don’t talk to that person regularly, it is nearly impossible for me to break routine or initiate a new routine to establish contact, or to ask for support that I am extremely likely to not be able to reciprocate unless they ask in turn..if I can at all. Then the shame spiral of not being able to do a simple thing, blaming myself for feeling isolated, when people have offered their support, then finally the negative self talk and self loathing. Feeling desperately emotional need, but absolutely no room or ability to ask for help.  

I was put on this earth to take care of people, and I know that is unhealthy, but relationships of any dynamic need to be reciprocal, which is something I am deeply unable to provide 6-10 months out of the year. 

I probably need to build new social templates but have been in autistic burn out for so long, battling deep fatigue, borrowing against far flung future spoons to get through days, that doing so seems impossible. 

Though I know I need to, I don’t know how to rebuild me from here. 

Hopefully this will be the first step, the planted seed that leads to blooms of self understanding, self acceptance…and dare I hope for self love? 

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Winter Update

Winter Update

​The holiday season is deep upon us, and the solstice has just passed meaning, the sun and accompanying warmth are slowly on their way back. 

I try to remember that from the depths of my winter flare.

Memories of last year exist in a haze. But still I feel a need to quantify my experiences. 

Last year I was in a daze by this time, major brain fog, unavoidable nap attacks, sudden bouts of complete immobility, multiple days long migraines, and often extreme pain in my joints left me half conscious and very out of contact with the rest of the world. 

This year I have cut out most grains and dairy from my diet and started a food log to track what I eat and figure out which things I’m reacting to most. I am learning to try and stay calm and even since I have reactions to my own body’s adrenaline. I joke that I am the world’s most delicate hulk, I wouldn’t like it when I’m angry (or any other strong emotion for that matter)

I have also added kratom, turmeric, l-theanine, and quercetin, to my regular treatments. As well as getting a pill sorter so that I am more able to keep up with my otc antihistamines, long term antacids, vitamins, and supplements that help with my acute asthma, depression, anxiety, and MCAS. 

So this year my flare feels quite different, maybe it is the medicine, or maybe it is a coincidence, I don’t know.

This year there have been quite a lot more joint partial dislocation, or maybe I am just more aware of it happening. This year my brain fog has shifted from slower processing and confusion, to being extremely forgetful. I have difficulty building any short term memories, and seem to also have difficulty accessing longer term memories. I have incorporated tools, like my kindles and Evernote app, to help me reduce my frustration with my low level internal memory. 

My fatigue has also changed a bit, it’s less often that I get the sort of deep fatigue in which i feel like my body is going to dissolve, failing to maintain its form from lack of energy. Instead it is cold waves of fatigue that way me down and eat at my determination. I’ve learned that if i push in this state, I will end up in that first state. I try not to. 

My pain this year, even with pain control has gotten much higher, over all body pain, burning skin histamine reactions, subluxated joints, constant deep joint pain, and periodic headaches that nothing stops, all accumulate to a lot of painful misery. Pain so bad that my brain echolalias begging the universe to make it stop, that makes me cranky and impatient on the best of days. pain that seems to heighten my all ready finely tuned senses, until casual physical contact is painful. My clothes hurt me, my entire human interface has pain anywhere it interacts with this plane of existence, impossible to escape. 

Whether it is an individual symptom, or a part of the pain and fatigue, I don’t know for sure but  seemingly higher pain levels have resulted in a months long battle with deep immobilizing depression, despair, communication inability,  and intrusive thoughts. I am safe, but miserable, learning how to treat and stave that off so that it doesn’t swallow me whole. 

There are at least 2 more months until it warms up, possibly three depending on how this winter goes. I try not to be demoralized by that. I am feeling a little better for now. But in the winter, I can not count on that to last. The next illness, stressful life situation, storm, cold snap, or anything really, could have me sliding right back into flare land. 
But for now, I’m feeling a bit better. I am able to write a little. 

Today I am going to switch the rat babies to a larger cage and hopefully tomorrow I will have the strength to work on laundry sorting. One day at a time. One moment at a time if needs be. 

Thank you for bearing with me. i love you and appreciate you. 

Flare

My pain flares start in the base of my spine, in the secret spaces where my pelvis, hips, and spine meet. To many joints in one relatively small space I guess.

Then it spreads down my legs, through the muscle tissue there, to my knees, and also up over my mid back to my shoulders and neck. 

The next to be taken are my upper arms, wrists, ankles, and feet. 

My hands get weak and swell earlier but throb with pain last. My individual fingers and over all skin are usually the last part of my body to join the burning. 

A cold heat washes through my muscles in waves, feeling like the jolt of adrenaline you feel when you are scared or embarrassed, only instead of nervous energy, it only brings pain. At first it is only a faint, warm, wave and is one of the first signs of an impending flare beyond my daily pain. It inevitably grows with the flare until is a cold, hot, implacable wave of wet, muddy, fatigue dragging me down into the depths of myself. 

Eventually the burning pain and the cold, muddy, fatigue completely consume me, leaving me at best half conscious. Half conscious, incapable of moving, barely capable of thought, trapped in my experience of pain, looping. 

In this phase, it feels like the energy is being sucked out of me violently, like holding my cells together will become to much and that I might die from the fatigue. I am a cellphone with 3% battery left, struggling to even keep the screen on. 

You can’t die from fatigue can you? I try comforting myself…but it feels like I am dying so it drags on and on. 

With the fatigue comes an ever increasing weakness and lack of coordination, first i can’t open jars, and need my cane more often. As my body seems to slowly be transmorgifying to jello or gravy, I get more and more weak. I fall more often, typo more, eventually holding my device for more than a few moments or at all, becomes impossible. My hands are weak, swollen, and floppy, like two half dead fish. I can do nothing, only useing them to push away or possibly, together to flappily leverage things toward me. Mostly I lay impossibly still in the end, even when as conscious as possible during that time, watching tv and marshalling spoons for child care until my nesting partner gets home so that i can lay lost in fatigue, a Herculean effort. Impossible but achieved. 

My lungs get more and more reactive and weak right along with the rest of me. My lungs carry a burning, raw, stabbing pain, a thick congested wooly feeling, and a constant slight lack of oxygen. Inhalers, antihistamines, and nebulizers are constantly by my side, as easily accessible as possible.

The crying might be the worst part though, something going on in there changes my brain chemistry, with the flare comes despair, self loathing, disgust, abrupt surprise intense crying jags for “no reason” any time my body recoups enough to be capable of even making tears. In the depths of the flare I am often sobbing or even screaming internally…but entirely unable to move. My heart feels as if it is melting away, depression consumes me. 

“Did you have a nice nap?” I’m asked. 

 “no” I say, “that wasn’t a nap.” to brain fogged and fatigued to even explain what it really was. Relieved that for now at least, I can at least speak and move weakly, communicate with my family. 

Knowing full well that it will always be back. 

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. 

A Midwestern Ghost Story

A Midwestern Ghost Story

I am a ghost in this hospital. Everyone looks away, through me entirely, or shudders in disgust. The cold air wraps around around my spine, whispering sweet negativity. 

Hospitals make me uncomfortable. The same noticeably neurodivergent and obviously gender non-conforming or non passing traits that make me “weird”, awkward, and uncomfortable for random civilians, makes me automatically suspicious to many self proclaimed authority figures, usually including doctors and nurses. Their scowls and scrunched disapproving faces in turn make me feel more anxious and deeply, fundamentally, wrong. I pick, flap, flail, and vocalize nervously to cope, which makes me seem even more questionable, more suspect.  

I make myself as small as possible as I move through these halls, as unremarkable as possible. If given a choice between invisibility and open disgust I choose the former…not everyone is lucky enough to have a choice.

As an adult I have never had a doctor that didn’t obviously dislike me, not even the nerdy cis woman I talked to about Stargate Atlantis and Fringe for twenty minutes. I had thought that perhaps women doctors would be more receptive to my asking questions, to my me-ness, but that hasn’t proven true for me. 

My last GP gritted his teeth and sneered at me any time I asked a question about my own health care. The last time I saw him he “broke up with me” for irreconcilable differences. It was for the best undoubtedly. 

But how can I get good health care when my doctor loathes me? assumes I am drug seeking because my body language doesn’t meet their expectations? because I find eye contact with angry strangers nearly impossible? 

Well, I don’t, and I haven’t, to be totally honest. I just haven’t, and I am not the only one. IBPOC have an even steeper uphill battle to getting health care that actually helps them. They are fighting hundreds of years of dehumanizing and dismissive systemic racism, both generalized and specific to the field of medicine on top of judgement from any other marginalized aspects of their identity. Visibly disabled people, the mentally ill, immigrants, nonchristians, displaced people, those who are chemically dependent, among many others struggle with getting any health care, much less sufficient health care due specifically to the bias of health care providers. 

After a life time of bad experiences, even being in a hospital for visitation makes me feel alien and anxious, self doubting. It takes a moment to work up the bravery to speak to any of the employees. I’m always mildly shocked if they are actually helpful. 

This trip was surprisingly ok. Thank the fates for that little kindness. Next time I’m likely to not be that lucky, many of us in this country won’t be. 

Healcare should not be a privilege

living without chronic pain and illness should not be a privilege 

yet here we are in a world running, most harmfully, the way it was designed, and only really helping those who are both willing and able to play along in a deadly game. 

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