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.

The song of the stars

The song of the stars is so much quieter than I remember.

In this state, I’m rarely listening for the sounds of nature. I know how to listen to silence.

How to not ask the stories she’s aren’t ready to tell.

So I often sit with stories untold. Waiting until these little girls turned women too soon — still children too — whose emotions overwhelm them.

It’s okay to be angry. It’s good to be angry. It makes sense you would be angry. I’m here. I’m listening. 

Often this dialogue is merely subtext — between sips of coffee, entering conversation — forgetting nuances — social niceties —

I talk. She listens. She talks. I listen. The unsaid screams until it’s all I can hear, but I cannot name what happened. Because I can’t know. Won’t know. Often know.

But this isn’t my story to tell. It’s hers. I fill the silence with validation. With repetitions of the obvious. Until feelings return to the face before me.

Two women sitting together in a cafe. Facing a world that often demands our smallness — no space at all; until we are nothing but our fears. Our anger. Our right to feel hurt. Be hurt. These are forgotten. 

Forced to forget the past, we lose these little girls who felt everything. That hurt until feelings stopped. A circuit broken by the violence of words.

When she begins to say the words aloud — I make space for lies, half-truths, and not yets. I know the story, but I don’t. It’s like a half-remembered melody barely heard. But I can feel the rhythm of music unfinished.

Suspecting abuse, I stay quiet — because I’m making space for her words. I begin to ask hows. Whys are best unknown. Differential diagnosing in my head. 

How bad? How long? What would even help? Do you want help? 

All of these questions echo in my mind as I listen for the harmony of silences. Nonexistent parents. No caregivers. A girl who raised herself. 

This is she. This is me. This is all of us. Making family where that word brought only pain. 

We are survivors of who knows what. Relentlessly braving what should have never been. And I am here until she is ready to join this chorus of shouting starlight.

Into skies of grey and black. Imagining the blue and purple of who we could be. Are together in the nighttime.

An unexpected visitor

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?

 

Being in community and sitting together

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).

For young women who listen well when I’m melting down at the library, who remind me people are good and caring, i give thanks. #nuances

— Kat (@Ask_anAspergirl) October 7, 2015

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.

At first light

This morning felt like space of #shediditanyway: stimming and clapping, rehearsing and monologuing, I shared what I know well. #gradstudent

— Kat (@Ask_anAspergirl) August 18, 2015

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.

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.

Voldemorty things: On giving up shame for Lent

Lenten season ended yesterday. This year, I gave up shame (or more specifically, internalized ableism – the self-imposed rules for not appearing disabled and feeling badly for needing help, the stories we hear about what #HighFunctioningMeans). This practice felt like praying for patience — an invitation to a universe ready to provide plenty of opportunities to be patient. I’m learning to recognize these acts of self-shaming, and resultantly have experienced meta-shame (being ashamed of shame — wishing I could just get over myself already).

My grandmother died in early February. I’ve alluded to familial grief before — the loss of abstractions I needed: safety, calm at home, routines, and people to help me label my feelings. I’ve cobbled together support systems of mental health professionals, prescribing clinicians, and a chaplain lady. Grandmother was remarkable and helped me find a security I barely knew before living with my grandparents as a high school freshman. She mothered me — another Mrs. W in a longer narrative of women who cared for me emotionally when traditional figures couldn’t.

The Friday before spring break, I found myself sitting on the floor of the School of Education, trying to calm myself (with the help of an undergrad I’d just met and proceeded to talk to/at her) and to remember what breathing deeply felt like. She was pre-med and remarkably good at staying calm when I was visibly anxious. It felt like hours; she decided to skip class to sit with me. I was apologetic. She kept reminding me that it was okay. I was okay.

Since then I’ve tried two sets of anxiety medication: First clonazepam + generic Wellbutrin, then tapered off when my therapist (Dr. W.) remembered the former led to depressive symptoms a few summers ago. The bupropion seemed to make me ragey — at ableist f-cks and people who heightened my shame.

In response, Dr. W introduced me to the psychiatric nurse practitioner (NP H.) on campus, who wrote me a prescription for buspirone (generic Buspar, a 2-3X per day anxiolytic). I left NP H’s office with a script and detailed instructions for titrating my anxiety meds. A kind undergrad passing by health services helped me reset my medication alarms. I felt simultaneously apologetic and grateful.

I’ve taken the therapeutic dose of meds for the last week-and-a-half. The buspirone seems to be helping (she said hesitantly for fear it might attack like every med before it). I’m starting to feel better — calmer, spending fewer afternoons on floors, remembering to pack my meds case and stim toys (Tangles, coloring books, notebooks, and crayons).

I’ve learned to let other people take care of me over the past few months. These experiences are terrifying. “I gave up shame for Lent” has been my refrain since this season began. Even when my supervisors at work couldn’t acknowledge that my inability to pass explained my recently poor job performance.

I gave up shame for Lent. I needed to choose myself, every bit of self-care I could practice, over perfect performance at work. I was late, overly talkative, but still very much myself — more so than usual, and people began to worry. I’ve passed well — quirky, rather than Autistic. I’m saddened and angry that passing is survival for people like me.

I wish people were more patient when I’m visibly struggling. I wanted to curse at my performance review — on giving others their time and space. What about me? My needs for time and space are ignored too, I wanted to declare. Ableist   f-cks were the words I suppressed. Aloud, I spoke of getting better: I am X; I’ve tried Y; how can you help via Z. I appeared contrite — apologizing for my atypically expressed grief, Autistic social norms, and the scatteredness of anxieties. I apologized for me, for being unable to hide my struggles. Sorry, not sorry.

I’m learning to slow down to feel better, even at the expense of missed deadlines and confused looks from others. This is what managing looks like: Stimming and grounding, making meds notes to share with NP H., and talking about mental health like it’s the weather. Self-care is acknowledging my own kind of normal and letting trusted people into this narrative. My meds alarm goes off three times a day and I feel ripples of shame at my feet. I am anxious enough for meds. My friend reminds me, “Pill shaming is yet another form of internalized ableism.” I believe her.

These are the #VoldemortyThings, what shall not be named for fear of the conversations and looks that will follow. The not understanding because they have never experienced these kinds of normal. My normal. I’m grateful for those who know how to hold space for the things we would rather leave unnamed.

The baristas who listen well by nodding and saying the reassurances I am waiting to internalize. The friends who take me home after I’ve had a meltdown at the cafe. The proprietors who ask me to categorize their tea box. These are “the nuances and anomalies, the things I assume only accessorize my day.” This is how I’m coping well enough. #ThisIsWhy

Songs of disconnection and reconnection

I am that lady grounding for her life, across sidewalks and slowing at intersections. Helping myself stay here and accepting the fading.

— Kat (@Ask_anAspergirl) March 1, 2015

Dear calves, you move me place-to-place — steadying me as I feel like shaking, am shaking, as body is here — brain across town. You linger with me as I hop and tap. Learning to remain here — pieces of me sustaining oneself.

Body and brain in disconnect, we find ourselves here — in the in-between. I fade, you see. Blonde eyelashes to block out the noise of outside — inside. Too close and too far away at the same time — trying to prevent an imminent shutdown. Letting it happen.

I wrap my arms around my diaphragm, trying to remember how to breathe, then sing instead. Keeping time in 4/4, 8/8, 16ths with my boots — shoes touch earth. Remembering how to ground.

Fading and remaining here — feeling in-between the tangles — finding myself here again. In the fear. In the death grip of pen to paper, I describe what I think happens when I fade away — both too far and too close.

Self-acceptance is letting myself go — practicing in the in-between. Letting myself just be there. In the fading being. Fitting. Belonging. Remembering to breathe, slowly and deeply.

You are here in this place. I am here in this place, she reassured herself.

It’s a mild form of dissociation, she said. I don’t lose time, so much as fade away in fear — to lose control is terrifying. To let body and mind part from utter exhaustion, to accept the fading feels like a loss.

Not me, yet me entirely; in this fear, I remain drawn back in rhythm and scripted dialogues — of a future calmer. Then now, of going on and then stopping entirely — pausing because she has no other option but to wait with a body betrayed — as her knees shake and mind runs.

She is here. Waiting with her breath — voice beside her.

The only way out of this is acceptance. Going through and eventually arriving at a place between utter exhaustion and latent calm.

I am learning to tesser. To be terrifyingly in-between: space of there and not there. I’ve sat with this fading; eventually brain returned. — Kat (@Ask_anAspergirl) February 28, 2015

Seeking narrative and secondary characters

Last week, I found myself in my therapist’s office, trying to explain why oral exams are utterly terrifying. These comps feel like a manifestation of my disabilities — the delayed auditory processing and pragmatic language impairments — not a demonstration of everything I’ve learned in the PhD program. There’s a gap between my written and oral language, between the thoughts in my head and what I’m able to express — especially when I get anxious. In these moments, I feel so lost — stuck in a space I’m only beginning to understand.

I’m learning to be visibly Autistic and slowly finding allies in my department. The professors who will acknowledge their own vulnerabilities feel safest. In these conversations of invisible disabilities, I feel less alone. We reach a point in these talks when I realize I could continue to remain at a professional distance — talking about my research, not me — instead of showing myself. It feels like a painful kind of show-and-tell. These are my struggles; I’m learning to live with them. How can you help?

The few professors I’ve told I’m autistic, those with whom I’ve shared my narrative, have been surprisingly supportive. So far, my allies consist of special education professors and a statistics professor. In these offices, I feel heard — like what I’m saying makes sense, that it is true, that the supports I’ve requested are reasonable. They are making room for me.

This past week has been a series of phone calls and meetings with helping professionals who will support me in the accommodations process for Orals. A few days ago, I had my intake interview with a student clinician at the University Assessment Center; I began the 4-6 week waiting process for an ASD evaluation. I met with the accommodations coordinator at Disability Services later that afternoon.

So how am I feeling in this flurry of scheduling and questions about how I know I’m Autistic? In between the waves of overwhelm is a sense of relief, a slow dissipation of fear. I remember sitting in the tiny conference room, with a round table, two chairs, and a whiteboard, being utterly terrified. Waiting for the phone to ring, readying myself for intake, I spread my notes and diagrams before me. This is me; this is my story; in 30 minutes, I will recall two years of manifested ASD traits. I felt I needed to defend my narrative; fearing I wouldn’t be believed, I presented a litany of evidence.

I can recite portions of that DSM-5 entry nearly from memory: when demands exceed the Autistic adults’ coping skills; this is when people like me fall apart. When we convince ourselves we are broken and wrong, developing shame as we learn to hide. Before we found there were others Iike us; we thought that we could get better, if we kept pushing ourselves.

For me, help-seeking is a recent practice. I’ve learned to send texts or show up familiar places when I’d much rather hermit. In these moments, I’m asking others to accept me in the midst of stuckness — in the shutdowns when I talk at a friend, trying to transfer the flood of words in my head to the space between us.

Self-acceptance is a strange process. I notice my quirks, the traits that make me noticeably Autistic, and feel so weird. Othered by a tendency to get lost in my thoughts and completely forget why I entered a space — forgetting about time and place entirely. Noticing shame doesn’t dispel it. But I’m learning to have these conversations that create space for myself. To check in with friends mid-monologue, to try not to apologize for who I am — my way of being in the world. It’s hard.

Sometime I don’t believe myself when I say I’m Autistic. Perhaps because I lived alone in this narrative for so long, not even able to claim it as mine. A story of finding workarounds and people like me in an ill-fitting context. To realize all of the reasons I struggled in clinical work are why I thrive in research. To let myself be odd. To stand in a crowd, amazed as the music of that evening’s concert surrounds us and the room is stimming. We move in the rhythm of that space.

I am learning to accept myself in community — to practice being proud and let others in to see my process. In the hurt of being myself, I am learning to let others support me. As I openly acknowledge that I had a shutdown earlier that day and let myself feel the surprising support that follows. I’m learning to cope, even though my circumstances are still exhausting at times. I’m passing less. I’m letting people help me. Perhaps in this interwoven narrative of why did no one notice is another strand: How to manage, even thrive now. And so, I keep practicing.