Ask an Aspergirl

Pondering popular culture, generalized anxiety, and being Autistic

Into entropy

In such turbulent times, I feel smaller and lapse into doubt and disbelief. When suffering is so relative and my life feels rather slow. And yet my mind worries, perhaps coming from before. But this day-to-day is long enough. I cannot imagine mass-scale casualties or loss of lives. And ideology of violence and  hatred feels too abstract.

Chaos reigns, said the fox. We go into entropy. My thoughts overly examine will overwhelm. When there are not enough lists to contain the will be’s on this tiny dot of green and blue. It’s hard to imagine a year from now without falling apart into blank pages — all I see is not yet and I don’t know and the vast lostness of what I cannot know yet.

This turbulence happens on a micro-scale: missed bus, forgotten meds taken close enough, trying to imagine  recreating my network of professionals.  I stare into the storm of will be’s, when the list of nows could overwhelm.

There will always be things left to do is hope and reassurance.  Damnation and statement of fact. I could imagine myself through this space, but I lack the imagery.  In these turbulent times, my problems feel small and yet this life of doing enough and being with this precarious enough.

I feel like a spider whose web is facing winds and rain; nearly blown away, but threads remain. In these turbulent times, I cannot process everything at once, or see beyond myself. Global pain is an abstraction. Over there captured in imagery that comes to my screen in 140 characters and infographics.

We share personal narratives to make sense of these larger patterns. A chorus of me toos on #ThatAbleistScript. My day-to-day barely touches this larger space — mine is getting by and hoping for more; while doing what I can, wondering if it’s enough.

My emotional weather is enough to track. Problem-not-to-scale are problems enough. Tracking the befores and afters, hoping a pattern would emerge. Because sensemaking is comforting. And yet so much of this storm predates me.

I don’t know how to have a conversation with you. Instead we talk of cooking fish and doing errands. There’s a script we’re both following with parenthetical dialogue. The storm passed; is passing — but the narration is absent.

In these turbulent times, I need an emergency power-down switch. Before overload comes, I wish my brain would tell me how I’m feeling. And yet that usually comes from fictional characters. Body and brain in disconnect — sometimes asleep at the controls.

In these turbulent times, I’m catching up with myself. Running down checklists of tasks I wish weren’t mine. Making up certainties from an imaginary will be. I’m not there yet. This waiting place is task enough. What next? A fictional future appears.

I tire more easily these days. As if my body knows what my brain will not reveal. In these times, normal is relative, ill-defined. I have so many stories that remain my own, but what if community emerged.

What if we are creating this busyness? In failing to rest, we miss this obligation to ourselves. I get lost in the not yet, fearing what I cannot anticipate. External turbulence is pervasive, yet inexperienced. The end draws near for some, yet here we are.

It all seems so random — maybe this turbulence is entropy, the chaos of a universe behaving like a toddler, toys scattered across the floor. Until Legos press into skin — leaving indentions.

How can we can we steady ourselves in a space unknown. Unexplored. Too vast to imagine anyone but ourselves. People not like us become monsters, dissidents, the ill-fitting. Am I us? Are you us?

What keeps our planet steady when we are not? We are pieces of stardust in a seemingly limitless galaxy. We are nothing and everything. We are enough to be with this chaos.

These spirits are absence.

The spirit of grief lingers with me, through time and space, not easily described or grasped. It aches, sometimes desperately and violently, until I can feel no more. We live together in a space barely explored. Where words are deprived of their meaning. When the violence of metaphor barely explains what it is like to live here in this.

Anxious, trouble, troubled, but only after the fact. In the excruciating now — would be too much for her to handle. I would be too much in overwhelm. Fearing she would encroach upon my space — my anxiety — to handle. To throw pills and magic words at an illusory condition. To will myself here and have my mind wander anyway. To accept myself as I am. But you need me to be better — but that’s not myself.

I have so many metaphors to describe these lingering spirits of worry and overwhelm — as they loop and surpass I and then. I lose myself in imagery, trying to describe what outsiders cannot feel. These ghosts of what was and is. How I grieve for what never was. As I become myself, the violence of words plagues me — as anger and unintended cruelty visit me in yet another form.

A brain against itself cannot stand; but it can breathe, sit, be with the moments I wish away; on floors of clean, well-lit spaces, as I wonder if I’ll always be here. Clinical language cannot describe this viscera. It just is. I sit with my worries and unsteadiness until I safely return. Sometimes after the flood of words and the torment of shame relents.

I sit here waiting and hope is here too; a ghost of memory reminds me why I cannot pray to far away or up close. I was abandoned unto this. So here we sit with a community of ideas and bodies. Of an after this, when we live here.

Grief is like a boomerang, distant storm clouds that shake bodies into memory, into being together in the inexplicable nothing. In the why would God; why do we still believe in anything; when it breaks so easily. My words go into air as I grieve for an idea that becomes being. Here in this place; fitting; belonging.

I was talking to a ghost. A paternal who never was; could never be, as grief cycled through generations of men and abandoned us here in the echoing silences — between the floods of angry words. Here we are after the storm. It is too quiet. Can’t they hear the distant thunder? See the cracked earth? The dead leaves — crumpled under feet as earthworms turn to soil.

In the post-conflict of grief, I sit and sing and be with a figure I’ve never known well — a jello-molded god of what was not. Can I be disappointed in non-existent, maybe is imaginings? Is it easier to find a ghost than to implicate absence? I’m angry with an idea, but today we sit with a grief I share, but never knew myself.

You hurt, I cry. As you speak of a kind man I never knew. I wish I did. Mine leaves me vaguely written well-wishes. Any more contact beyond these ghosts would hurt me too much.

Sometimes i don’t believe my own phantom pains. Wondering what could have been, if they, if I… But these what might be’s are only ghosts. And I am here with aching grief — inserting hope into a pain I am only beginning to explore. These wounds are deeper than I know.

I wait to be minimized. For a proclaimation of not enough pain to count. But ghosts don’t care. They linger and remember the was and is. As I hope for what will be after the violence of memory.

Being in community and sitting together

Sometimes I feel like Larf the Sasquach from Ashley Spire's storybook.

Sometimes I feel like Larf the Sasquach from Ashley Spire’s storybook.

I remember how I felt reading Emily White’s book, Lonely for the first time. I felt known, like she was putting words to the aching isolation I knew all-too-well. That was during my first year of graduate school, before I’d realized I wasn’t a school psychologist.

Before I knew I was Autistic (pre-ASD diagnosis, before I’d found women like me online — via WordPress, then Twitter and Tumblr); back then, I was merely odd and disconnected for reasons unknown. But Emily White knew my story; because she was lonely like me.

I recently finished her second book, Count Me In, in which Ms. White describes how she attempted to develop a sense of community — to feel more connected and make like-minded friends. The passage that stood out to me was about how we can map our social connections:

I can close my eyes and imagine physical spaces where I feel safe — where trustworthy people who accept both me and my disability (because they are both aspects of myself) exist. These are spaces where, as my refrain goes: “I am known and loved, because of, not in spite of myself.” With these elder women and friends whose families were as unsteady as mine, I feel safe. They know my backstory and my present states. The emotional weather patterns I’m still learning to discuss in plainer language.

Over the past couple of weeks, or maybe even the last month or so, my anxiety worsened. I’ve sought out supportive people. I’ve found myself stuck in public spaces, needing strangers’ help. My memory lingers on an afternoon at the library last week when I, mid-shutdown, didn’t feel present or safe because my processing had slowed to near halt. I monologued and tried to determine what I was feeling (mostly anxious).

And so an undergrad whom I barely knew sat with me, as I tried to calm myself — to slow my breathing and find a pastry and coffee in the atrium. I remember being ashamed and grateful — into infinite loops, it seemed — the feeling burdensome and too much. But there I was being helped by a young woman kind enough to sit with me in the overwhelm — my overwhelm. I apologized a lot. She thanked me as she headed to class, and I safely walked to the bus stop. I couldn’t understand why she was grateful.

Vulnerability is terrifying. I spend much of my professional life hiding and explaining away the seemingly quirky things I do (read as: appear visibly Autistic when I stim and monologue). But when I become utterly overloaded ( >7 out of 10 on my loosely defined anxiety scale), passing is no longer an option. Unless I want to shift into the unpleasantness of uncontrollable crying and rocking that comes during my rare meltdowns. All I can do is try to steady myself. That’s enough to exhaust me.

Growing up, all I wanted was someone to sit with me and tell me what I was experiencing was real. That I would be safer soon and that it was okay to feel however I needed. I desired presence. I’m reminded of one of my favorite scenes from Lars and the Real Girl:

“This is what we do when tragedy strikes. We sit.”

I’m finding community, even in my hardest weeks. I’m grateful for friends who have learned how to be present with me when I’m struggling — for those who ask how I am and accept the honest answers. They steady me, even in overwhelm. For safe spaces and people, I give thanks.

To be believed…

If you were to be believed, if you told the stories that remain unshared, what would you say?

My parents fought; that’s the easy way to tell this story, but that isn’t true. Not really, and the loss I feel in that telling hurts, desperately and violently. And I ask myself why I’m lying. For them? For me? For all of us not ready? Because I’m not ready.

For that face

that follows the telling.

I am believed, but scattered too — as unspoken things come to light — always too soon. I’m not ready and neither are you — never will be for this litany of sorrows. No substance to blame, a simpler before to predate an angry after. Only a sadness described: “My dad wasn’t a nice man; I wanted to be better,” he said. “I can’t.”

This hurts to speak, to write, to be. I know. The pressure of heart and mind reaches my pen, my hand, my being. My side is pain. Tension in the telling. I am here and there in the telling. My dad yelled. I hid.

In science fiction and tessering narratives. In families not as sad. In stories I could recognize. I tessered to — traveled away from here. To an unfamiliar better; but that room of spackled ceiling and little girls hiding — one distant, the other all-too-present — remains, and they hurt.

I tell you — sitting across from me —

“All families have problems.”

“Not like this.”

I want to shake them, but instead I nod. “I guess so.” This hurts; I know. I try to speak again — of never knowing safety, then having to patchwork it together in a dwelling that is solely mine, with only the company of an orangey tabby.

You are safe; you are here — a repetition I hope to believe, need to believe. Sometimes do and it hurts. “Excruciatingly so?” The woman across from me, the sage, inquires. I am here and there simultaneously.

My thumb and forefingers cramp, in the memory of being misunderstood. Where is belief without mutual understanding, a shared pain? I wish you did — but you don’t. How could you? You want to believe me, but don’t know how.

So we sit with a coffee or two between us, as I share this lengthier tale.

What’s in a name (or diagnostic label: 299.00 and 300.02)

Hi my name is… like those plainly typed paper badges where I scrawl myself into that adhesive space. Hi, my name is pen name — hi, my name is disability — expecting to be corrected for identifying with myself; that isn’t proper.

But names are identity and backstory and narrative — the interconnected tissue of my being. When I stop pretending to be anyone but myself, I am named. I’ve given myself a series of labels — not the sticky kind — the ones that come with diagnostic codes and insurance billings.

I’ve had names bequeathed upon me — quirky, autistic, wordy, enough, creative, becoming, herself, myself. But to name myself enough, and then to repeat it, feels powerful. To claim enough space for myself — identities that were mine only out of recognition, then declaration.

Perhaps a name is a story — my story — the one that begins in a cramped room with two chairs and I. Where I felt inadequate, incomplete, lacking. Missing pieces of a puzzle I had not discovered. Then throwing away the unrecognizable picture on the box. Recreating images in cut-up paper and magic markers. We start in the middle, only to find myself in loop — in between — but further from the beginning.

These words — the ones I share in illuminating dialogues — are magic. I recognize the space your child occupies. I can name it because I live a few blocks down. With a map covered in landmarks and identifying places. I don’t know what they are thinking and feeling, but I can share the value of my own story and marvel in the recognition.

To know, or feel rather, that the most painful spaces matter — where I occupy and never leave — with the figures I never invited. I am a guide, but also a traveler. We become in a space we’ve walked lengthy times, but never named or fully recognized. I am… and so are you… and in that is a community I never expected to find… where both you and I belong; a wavelength undiscovered.

Where time stretches into narrative space into naming and being; experiencing and reliving; where identities and persons blend together into place unknown. Where we find ourselves together.


In this space of now and not yet, we name ourselves and live these experiences. Merely being here now; in recognition of selves, we story on.

At first light

I resist its presence — covering my head, resenting the blackout curtains for doing such a poor job. I hide from a day approaching — resisting its start until the alarm.

This was before. I don’t know if I’ve reached an after, but I’m trying. Coming to a place of steadying myself, as I hear the voices of those who prop me up — give me copies of their own well-worn encouragers. An okay to follow the uncertainty of not yet, a newly arranged furniture set, an office setting filled with my words, my worries — created ideas of what I wish was — where I travel to in my mind of days far too long.

But she says I’m doing better — I’m relieved and surprised — in the lighted windowbox where my truths are spoken, there is pain and memory. Of what has been for far too long. A grief of familial origins — of not feeling safe until these steadying years. To realize this has been a coordinated effort, I feel cared for, loved, mothered — feels strange to say that in this created space — outside the piece of theatre, one act at a time– where I am forced to sustain myself.

Under these lights, I am home. Cared for, caring — as I sink just a little deeper into the couch, tangle between my fingers, I plan for thriving, to explain the hurt I cannot name aloud until now — but so many sentences I have written.

Urged along by my fellow women autists, artists, writers, creators of this space that is hyperreal and just close enough. Lights travel through fiber optic cables, bounce off cell towers, and bring me home. We listen, creating space for us, for me.

She pencils me in for a week from today — I sink into the couch outside — not yet ready to leave this sacred space — to push myself into the blaring sun. A wooden box is clasped between my fingers. I slow myself, only to rock back and forth, ever so slightly in my seat as I type and plan and live here. Being for a while.

There is safety in not yet — a list made — a listening ear to tell me when you know — when you have — because I believe you . Managing is hard to describe, thriving even more, but witnesses were here. To see, to describe, to be in this place.

“Known and loved because of, not in spite of” — into echolalic time and space — into place unknown. There I am — as words I know well enough leap from my mouth, as I tell you who I’ve been, unknown audience, because this is me — stripped of context or motivation. But my passion remains.

In subtext of women like me, as I avoid these pronoun shifts, but my fingers dance and my voice races, knowing my tablet could be my voice, if my words escape me. To assist; to augment, but I will remain here in this place.

Fitting, belonging, exactly as I am — all of me being myself, cloaked in a cape of words.

Cat story

So whatever happened to you getting a cat?” she asked after hearing how isolated I’d become this summer. I suppose I gave up in the idea. Maybe I talked myself out of it after my car met its demise a few summers ago. The pet deposit was nearly a month’s rent. I was worried how I would get to the vet if the cat got sick. Adopting a cat felt completely unrealistic and unsustainable — another “not yet” in a series of post-graduate maybes.

But when I got home, I decided to call my landlord’s office, just to see how expensive the pet deposit would be. I left room for hope and perhaps another point of connection. “People are still important,” she reminded me, “but having a cat could help you feel more connected — less in your own head.” I was surprised to hear that the deposit would be waived because my therapist had written a letter of support for me to get a cat as an emotional support animal.

I texted a friend of mine (because I’m also trying to reconnect with friends in their own busyness). We met for tacos and toward the end of our meal, I apprehensively brought up the idea of adopting a cat.

I’ve learned to feel guilty for the pleasures I allow myself. Maybe that’s because I’ve mostly lived in survival mode — to take up less space and want fewer things. To grow up needing little because I learned the cost of things early in life. To hint rather than ask directly for things I wanted. I justify the small purchases I make — the decaf lattes are accompanied by social interaction; I get a cheap meal to leave the house when I’m lost in my thoughts.

Adopting a cat seemed impossible, given the current circumstances of my life. I worried I wouldn’t be able to care for the cat if it became ill. That my budget would be stretched too thinly. And yet I followed up on this notion. I left room for joy, thinking of sustainability in emotional, rather than just economic terms. I asked a friend for help in navigating the adoption process. I allowed myself to connect with someone who didn’t see my need (or me) as a burden.

I visited the shelter I volunteered at a few years ago, when I’d visited the possibility of adopting a cat. I brought a list of names from the online listings, but those cats didn’t seem like a match. Then I met TC, a two-year-old tabby who seemed rather affectionate. I asked my friend who came to guide me through the process what she thought. She agreed that he was mellow and would help me calm myself.

Last Friday, I took home TC after the adoption application had been approved earlier that week. Once I gave myself permission to look into getting a cat, the idea didn’t seem like such an impossibility. “Your mental health isn’t a luxury,” I reminded myself. “I’m capable of caring for a cat; being with a companion animal will get me out of own head.” I made lists, consulted with friends, and researched cat care.

I’m finding my own rhythm lately — texting friends to spend time together and being more intentional about conversations in community spaces. I’m taking care of myself even when it’s hard. Coming home to a fluffy orange companion helps with this process. I’m making room for joy.

imageImage description: Sleeping orange and white colored cat rests his head on the leg of person wearing grey shorts. Both sit on a blue patterned couch.

How to poem slowly

Write a few lines on a scrap of paper — stop writing from the exhaustion of the day. Feel bad about your lack of writing and the ensuing self-deprecation. Damn it self. Practice self-compassion again — feel badly — write about not writing — wonder why you’re not writing. Stop writing because all that comes from you is slowed and stuck and your hand is cramping.

Keep writing. However slowly.

Because your words matter. Remember why you write. Create a hashtag if needed. Listen to the words around you. Before the shit was hope and fluidity — where fear dwells is the blankest page. Then blaming yourself — myself — for the exhaustion of late.

Keep writing — for these words might resonate with others. They speak words of lived truth. What we are learning to say aloud. Of autistic truth and fear of finding the right words — of self-censorship — of tweeting these fears into the void of the internet, hoping for a response — waiting for the words to come and finding the dialogue we missed entirely.

Of how to poem slowly and live, sitting around a table of witnesses to our stories. Herstories we share aloud. The deepest fears longing for expression. She keeps writing as spent emotions become verse. Scrawlings on a page that are enough. And so is she.

Poem slowly, so that these longings may coexist together. That we may know we are real. Here and out there — in these spaces of ill-fit and utter comfort.

We make up words in the safety of here — as thoughts of shame and guilt, perseveration and self-doubt turn into hope. In conversations of building and living, coexisting in spaces of acceptance.

We write, so that we are not alone — that I am not alone — in these thought loops and self-effacing litanies. That we might believe the encouragements and self-affirmations of others — because they are true and they matter.

Poeming is a process — a self-created verb to guide us through blank spaces. In fear and doubt, there was a poem and in longing for elsewhere was an expression of being. I long because there is a place calling me.

Through poetry I might arrive there.

Path made by walking

This path made by walking can be utterly terrifying. She says I’m a pioneer, but my brain jumps to the Oregon Trail game I played at the library. So many lost in the journey.

This path is undefined — how do I describe what I want — what I only recently discovered — when I still have trouble saying these words in a public setting. Standing out brought me here — unable to hide what I could not do. I forged a new path, not sure where I was going, but better than here.

A pioneer without a map — looking for a destination in the land of I don’t know — trying to deconstruct that statement — to feel in all of the thinking.

What if you were that person — the one described in a narrative of resourcefulness and bravery?

I don’t feel brave. But I am here. A character in search of a narrator. Could you just tell me what to do? Impose a setting upon me where I can live in peace.

This in-between is scary. Is there safety in not knowing — trying to define myself with adjectives I’m learning to apply. To see myself in motion. No one is a static character. I want to find my own script — to place words over this blank page of what next.

When I can only feel pressure to be sure of what now — this path made by walking is continuing on. By faith, she… these old words buried in that growing up space.

This path is here — in the uncertain places she walks, trying to hear her own voice in the noise of what she fears is already known. I walk a path undefined — with tiny, uncertain steps, becoming what I don’t know yet.

I don’t recognize this path, but I will. I live in not yet — an unforged will be is coming. I keep walking slowly into this becoming.

Sometimes feelings are hard.

This is me sitting in the waiting room, moving my Tangle back and forth as Aloe Blacc plays from my headphones, then switching to sketching a tree in my poetry notebook. I stim and intentionally breathe. The psychiatrist is running late and I’m already nervous about seeing this new clinician. I got a phone call the previous week that my former nurse practitioner was no longer seeing patients. And so I sit there, waiting to be called back, tired and anxious.

I suppose worn isn’t an emotional state, but when I’m feeling utterly exhausted, describing my feelings becomes increasingly difficult. These experiences are too abstract. Dialogues about internal states become like a parlor game — describe the external cues and guess the feeling. I notice my shallow breathing and feeling distant, and then conclude I’m probably anxious.

But how anxious or for how long have I felt this way? I don’t know. Those questions are harder to answer. Sitting across from this unfamiliar clinician, I feel like I should have an answer. I try to come prepared for meetings like this — with notes on legal sheets of meds taken and how my body felt (tired mostly — but that feels so vague). In these moments I feel complicated, wishing I could see the histories taken by previous clinicians, those attempting to describe my mental state. I have trouble trusting myself — my report of what happened and what is happening.

I’m afraid my descriptions of my internal states — of myself — will be inadequate. That they will result in a treatment that only sets me further back. I fear being misunderstood — that my words will fail to say what I need, what would help. I rely on someone outside myself to interpret this narrative — to see the patterns I’m trying to describe. My tiredness is a frustrating distraction from the present moment. I don’t feel enough.

I suppose that’s an ongoing theme in my narrative. These not enough feelings that linger. Not enough sleep, not enough words, not enough support, not enough direction, and not enough time. That my actions will leave a space for failure. I find as I get closer to dissertation, these fears of completion grow stronger. What happens if what I present is rejected? What if I meet these requirements and I still feel stuck? These questions don’t feel like they’re going anywhere.

I wish I knew where these questions were coming from. I can only ponder. I know safety is an unfamiliar feeling for me — that internalized sense of resolution never arrived. It was outside my frame of reference growing up; I feel like I’ve been trying to create that sense of security ever since.

This is usually the part of my blog posts where I’ve reached a conclusion or at least a stopping point. I have a harder time just writing into the ambiguity. Perhaps that’s my wound — the kind my writing group facilitator encourages us to write into. To say, I don’t know, and sit with these words is so hard. In these moments, I feel lacking. I am a rough draft — both in-progress and good enough. And so I keep writing…


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