Ask an Aspergirl

Essays and poems about Autistic experience, mental illness, & (post-) ABD life

Category: why I write

Footnotes from an extended hiatus 

Dear readers, it’s been a long [fucking] time since I’ve posted to this blog — even longer since I’ve written anything resembling a longform piece. But here I am, with my service dog — Marty the terrier — in my lap at Common Grounds (aka the neighborhood coffeehouse). 

Image description: Greyish black terrier wearing a service dog vest

Since we last talked I fell back down the rabbit hole that is severe depression (with some pure-O CD and generalized anxiety for company; I swear, sometimes I feel like I acquire co-occurring mental illnesses like mangy feral tomcats). But I’m still “finding ways to survive.” [1 — thanks Next to Normal for those Light lyrics].

I finally found an antidepressant combo that works — somehow,  Dr A, my psychiatrist doesn’t even entirely understand the why or how — Lithium and Lexapro (both generics — For Medicaid, and SSI, I give thanks). 

I’m still in therapy and probably always will be [thanks for hanging in there and educating yourself about (anxious and depressive) Autistic women like me, Dr H, trauma psychologist made of empathy and stubbornness].

Image: a whiteboard covered in stick figures and captions. For more of this growing therapeutic art project, see my Instagram: @askanaspergirl.

My days are simpler lately: therapy, psychiatry, pharmacy, art, poems, texts, tweets, and instagramed photos. But they are good sometimes. I’m still severely clinically depressed, but I’m here. I keep living out of sheer spite and fury, occasionally joy and borrowed hope. 

Image: plate of eggs and hashbrowns, beside sheet music

And “I don’t have to be happy at all, to be happy I’m alive.” Until next time, be kind to yourselves. Remember, you are good. This life is hard. But you are good.

Image: white woman with red hair in profile and a grey terrier wearing a service dog vest


 

With glittery bits of joy and tiny sprigs of hope, Kat.

Shelter in peace

The girl who sits before you contains multitudes — feeling far too old to be this young. I’m getting used to this back-and-forth dialogue. That lives in present, past — where trauma echoes and hope lives. I contain bunkers and bomb-shelters, yet another reminder to self, “You are good; this is just hard.”

The coffee on the table nearby is steadying in this fog. Chairs find their way — just close enough to read text and expression of this twice-a-week narrative.

There is shelter in this place, a room contained by time and affirmations of feeling. Of belief. There is a peace in just enough questions when answers would be too easy to explain away. Sometimes why’s don’t help. I am living in the how.

Blue would be too obvious — an explicit expectation for a calm that makes no fucking sense. So the room settled for shades of green and grey-near blue. The sunlit boxes are my favorite. This space contains a multitude of words. Feelings identified in the expressions her body makes — pain, tension, pain. I thank my body for giving voice to what I’m learning to name. Sometimes simpler words leave me as my anxiety rises — a friend’s name… I’m sitting in a — oh, chair.

I apologize to my body for what she understands far too well. Pause for breath before the words flood this box of stories. Sometimes the best I can do is describe the inexplicable. There are no why’s; the how’s and when’s and what’s ache with a body who knows more than I do.

Present tense — wrist aches, shoulders in and of pain. All I have are these words — sometimes I cannot say them aloud without brain and heart attempting an exit. Leaving my body and pounding through my chest.

I’m learning to feel things in real time. My feelings are returning slowly — anxiety felt, disorienting, but recognizable. Anger is a cloud of words, tone questioning this nonsense that she keeps happening. Sadness is a relief away — she comes so briefly. Only when I’m safe enough to mourn. I sit in a chair beside her; trying to explain what I don’t understand myself.

There’s validation in being told I am real, seen, that the lists holding me together are working and it is a feat of bravery to hide, to ignore phone calls, to grieve a storm that hasn’t passed entirely.

Vibrant metaphors find a home here — in this holding space — banking, castles, shelters, waves — then plain words — I hate that this keeps happening. This hurts. Why do I have to be so strong? There are no answers, only the safety found in an expression of kindness, of surprise.

I don’t know what normal is anymore. I suspect she doesn’t either. I find shelter in stories of becoming and sometimes being with is just enough.

Writing in present tense

September 19, 2016; at womyn’s writing circle.

It’s strange not to know what to write about not writing — about not being myself and no longer wanting to write about in-between, but that demands a hope that she cannot muster.

Present tense is rather mundane until it is not and then the writing comes in an account, so that she might believe herself afterward. When the apartment is quiet, but not safe enough, and she is sitting on the floor asking a stranger to help her brain and body meet again.

When writing is a laborious exercise, it’s easier to not. When the feelings come, they pass by before they may be described, as she plays a game of 20 questions with herself: anger looks like, sadness looks like, fear looks like. But sitting in her bathtub with the lights off seems too much to be believed.

Why write about what has no perceivable conclusion that is at all satisfying? Sometimes all she can do is write the words of others she hopes to believe herself. Not writing is a scarily easy exercise when the descriptions are repetitive and concentration no longer working.

When she isn’t writing, she wonders where she is — this undefined space of not yet and right now is rather exhausting. And she cannot write her way out. Sometimes the only writing that comes is a frantic record of “I can’t believe this is happening. Do you see it too? Am I overreacting?”

When I mostly write notes to myself to contain the present — when so much of this description has happened before, it’s an exercise in realizations she never wanted to need. More pieces in the never-ending work of things coming apart, of losing — of fearing this memory will be underwhelming.

This narrative has happened before and she only writes in hopes of being believed. She documents events that seem utterly surreal in the telling. Almost laughable in the sheer absurdity of not hearing her at all. Why respond when it doesn’t even matter? Giving up on explanations, she settles for a silence marked by shaking body and fingers pressing into a keyboard.

The only writing that comes is here right now and then in the me too’s of “I know that ache.” When I believe you is still a surprising response. When the present reality is documented in frantic texts and images captured on screen — knowing that the why’s will not bring peace. They are yet another story she tells herself until sitting across from this witness; who is astounded, then sad — who seems to have more feelings than she does.

There is no poetry in this present ugly, cannot change, only survive, endure. Doing the best she can, not her fault at all.

She listens for truths she is trying to believe — hoping to reread them into existence. When there are no whys that want to stick. Only shaky misunderstandings in search of a how.

A love letter to the Autistic internet

“Some people will never understand the kind of superpower it takes for some people to just face the day.”

My day begins at 6:30, sometimes 7:00, with worries and unsolvable queries. With self-doubt. With wondering how I will ever get through. My cat sits on my chest as I check the text messages I’ve accumulated over the night — from friends’ tweets across time-zones. If only people understood the lengthy space between waking up and getting up. Wishing for several more hours rest. Letting my chest rise and fall with orangey tabby sitting on mountainous blankets.

Some people will never understand — but they do — to the uninitiated, they are my disability support group — but they are more than that. My not-at-all imaginary friends. Across the world. And yet only 140 characters distance from me. We are broadcasting our breakdowns, meltdowns, shutdowns. Celebrating long-fought for diagnostiversaries with cake. I’ll save a piece for you — eat a slice in your honor. This is the Internet.

As we begin #TalkingAboutIt — sharing our moments of falling apart again, sitting in yet another waiting room, for a diagnosis we have long recognized. But these #onhere understand the anger of being misunderstood. How microaggressions are larger than they appear. We survived April together. Then our Day of Mourning. We are unicorns, Loch Ness. Museum curators of our own lives. Never self-narrating zoo exhibits.

We are our own — no need to explain, #onhere. We are a 24-hour clock, a news-cycle of disability, not-fitting, ill-fitting — creating our own space to be ourselves entirely. Coming out to become ourselves. Knowing no other way, we have made our own. A safety net in cyberspace. In Autismland. There’s a Twitter for everything: disabled, academic, feminist, some faith, grad student problems, me. #onhere together.

In a space where we name our own mile-markers. Adulthood is a process. Independence is an illusion, we remind ourselves. Sometimes we even believe our own stories. In this space, we have a shared story. Created nonfictions. Known and loved — because of not in spite of — I repeat to myself. Tell others what is true. This I know. Because we are not alone, here together. Stories typed into the lines of characters before us.

Here in this place — yes, we are, fitting, belonging. Together — here in this creative space of stories.

An unexpected visitor

Seedling

Drew McLellan (CC BY-NC 2.0)

This weight. This heaviness. This fog. An unexpected and yes, unwanted, visitor. I always thought depression would have more feelings. But this wait. This living in lack is too much for me. Bed is a respite from the drudgery of everyday life. Of pushing myself to do — again and again — until I cannot.

Being so tired all the time is tiring. In the exhaustion of being. In lack. In need. Overly anxious. Too much. Not enough. For me, for them — to get on with it. Shame is a weighty burden.

I want to give you up — a backpack of rocks placed on the shoulders of a small girl, now adult.

I long to molt. To shed this shame. A cocoon for wings — to leave it all behind. But shame is elusive — and it does not tolerate metaphors. It lingers in the broken places — my broken places. It hurt; I know.

Shame rips and tears and weighs me down. Berating me for this exhaustion. Too many words for you — for me, until there was only a blankness. But my words are slowly returning. To page, to life. I am returning to myself. Slowly.

Impatient with myself. This in-between hurts. I am restless for spring. Seeds to ground — looking for tiny sprigs of hope. To see. To savor. To water, then fertilize the soil with pills and words. As a rain of tears speckles the ground. Glittery raindrops appear beneath the soil. My roots and bones ache buried underground.

Healing is hard and I am impatient with time and this artful chemistry, when looking better comes before feeling better. Healing is hard, I remind myself yet again. And growth is slow — and often exhausting. Be patient little sprouts.

Take hope. Then leave aphorisms behind. Find your own words for being alive again. Roots run deeper still, even with little support. We grow so slowly. And patience, like hope, is hard to sustain in dry ground. But still, we hope. Because the absence of hope dries the soil. Seedlings need rain and fertile ground. A plan for living, being, existing. They cannot sustain themselves. Or live on hope alone.

And so we sit with these seeds buried deep in earth. Waiting for spring to arrive here.

Nuances and anomalies: An exploration of inspiration

I breathe in inspiration and and exhale hope — sounds like the beginning of a mantra. A phrase repeated, then believed.

But what inspires me — brings me life through metaphorical breath? These are “the nuances and anomalies of my day.” These are the things that bring me life — they are life. Mac and cheese Saturdays. Reminders that we’re glad you’re here. We anticipate and welcome your presence.

Community gives me life — inspiration to draw. In the faith of others when I do not believe myself. I am called to mourn with, be with, experience with. I breathe out words. Breathe in story. Life. Hope.

I breathe in becoming from the safety of community. When I don’t know where the hope comes from — and stare incredulously back when reminded of its existence — I breathe. I experience life as it is. I breathe out expectation. Breathe in love for myself. Notice the self doubt, wishing for inspiration, little reminders of what could be.

I let myself hurt for what cannot not be — breathing through the sadness, forgetting possibilities. I fear for hope. Inspiration is so easily squashed. What happens to ideas that never become themselves?  Whose existence is never made known. Only whispered.

How do I know when inspiration is real? Is it a ghost? A phantom dream of what I never had, could never be? Is inspiration hope waiting to be squashed? Lost before it can be found again.

Inspiration whispers, this is why. I want to believe her. Me. I want to believe in the possibility of hope. Is inspiration from the broken spaces? How does she mend? Can she create out of nothing, but fear and longing? How does she survive to become herself?

Is inspiration the thing itself or what comes before? How does she endure — to create in the blank spaces in between?

 

Write a love letter to yourself

Dear self,

I see you struggling on. Naming yourself, then seeking further validation. You needed that. That’s okay.

I love you even when you don’t know who you are or where you’re going. You’ll find your way. Perhaps you’re making it too.

I love you for trying — for self advocating — for continuing on. I love you when you’re tired and unsure of yourself — and wonder why you went to grad school.

I love you even when you are uncertain — I’m proud of you for taking care of yourself, even when it’s hard.

You are finding your words again — and even in the silences, your words matter — you do too.

Perhaps all those years of PBS helped after all — I tell you what Mister Rogers did — how you are valuable just by being you.

I know you wonder how people like you make it in the world — on their own — all alone. I wish I had a crystal ball to show you or a pair of spectacles from which to view post-grad life. But I don’t.

Even still, I love you for considering the possibility of hope — and will be — of passing through the fog when it will not dissipate.

May you learn to trust yourself — that the words you struggle to find to describe your feelings are enough, even when they feel inadequate.

Maybe your listener will surprise you.

You are not bad. You are not wrong. May you see what you have to give — because of not in spite of — yourself.

I hope you no longer have to hide. That you’ll find spaces where you feel safe. But when you need that cloak of protection, that’s not your fault. You are not wrong, but perhaps the situation is.

I love how you keep going. Routines are not magic, but perhaps they’ll guide you through the fog. Your ship is sturdy enough, even when the waves and winds grow strong.

I know you’re scared, but even still you’ve learned to ask for help. You’re finding the words to guide you through.

I love you for who you’ve been — who you are and who you are becoming.

May you sit with the girl in that room and let her know that she is heard. That her voice matters.

Because the door is open and the yelling has ceased, even though it echoes through memory.

I’m proud of you for taking her to safety.

And for enduring the storm together.

 

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.

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.

Reframed narratives and Autistic experience

Cynthia Kim, an Autistic blogger and non-fiction writer, includes a passage in her book, I Think I Might Be Autistic that resonated with me:

“There are other people like me! I’m not defective. I’m not randomly weird. I’m an Aspie. One of many.”

In response, I wrote in the margins of my copy: “And this is an incredibly powerful statement, telling shame to fuck off.” (I’ve noticed that as I’ve found ways to manage the anxiety, my expletive usage has increased considerably. Part of me still feels apologetic; the rest is strangely amused.)

It’s been nearly two years since I began this process: exploring the possibility that I might be on the spectrum, not ready to call myself “Autistic” (wondering if I fit anywhere) and lingering on passages from Rudy Simone’s books and later the writings of autistic bloggers. Last summer, I wrote a series of poems exploring Autistic identity; I called them my proud poems, after Laura Hershey’s “You Get Proud By Practicing.”

These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.

Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.

Last night at open mike, I read these words aloud. I spent the evening moving my Tangle back and forth between my fingers. Perhaps I was trying to lessen my nerves about reading in front of a crowd. It’s like Fight Club, I said to the friend siting beside me; if I attend open mike, I have to read. I realized sitting in my seat, that I would be calling myself Autistic, claiming that identity for myself in front of a crowd that size. “What if I’m wrong?” I thought. “Remind me why I’m outing myself in a public setting.”

Because this is the night of #shediditanyway, I told myself. When women share their stories with one another, maybe from the professional distance of 3rd person, but these are our narratives. You want to be part of that experience, even though you’re scared.

So I shared two proud poems, amongst the shaking of my legs and the audience before me. I’d already witnessed the tears and snaps that accompanied the other women’s poetry. They clapped. I walked back to my seat; the night continued. A friend from school hugged me afterward, telling me she loved “She Did it Anyway,” a poem that began as a shaming. In retelling that experience of shame, I wanted to find another story.

I’ve attended womyn’s writing circle these last two years as well. I started attending this group the same semester I started the PhD program, the same semester I acknowledged to myself, “I think I might be autistic.” I love the carefully worded nature of Kim’s title — how it reflected my experience of exploring my own identity. I think… I might be… It’s harder to form the words that follow because I could be wrong. And that’s still terrifying.

I’ve written so many versions of this narrative — why no one noticed my autistic traits as a child or even adolescent, then young adult (until they did), how I successfully completed undergrad, and where I made friends. Questions remain about what happens to Autistic adults like me — seemingly unicorns, whose therapists ask, “You mean Asperger’s, right,” even though it had been a year since ASD encompassed the entire spectrum.

We become incredible self-advocates — keepers of our own stories — because we have to — to be ourselves; to find a measure of self-understanding. As we learn to believe ourselves. Of course this is a thing, she replied.

My Autistic experience is a series of narratives — reframed, retold, and sometimes rewritten entirely. And the first page will state, in a voice that is growing louder, “She did it anyway.”

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If you are afraid to write it, that's a good sign. I suppose you know you're writing the truth when you're terrified. [Yrsa Daley-Ward]

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