Ask an Aspergirl

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

Tag: Voldemorty things

On not writing

What if I wrote about not writing, the why’s and hows are not enough; at best they are guesses. Trying to pin down a brain trying to float away. How do I write about this space that bores me to be with for too long; who can I blame for this disappointment — how some brains get lost in the middle of things and that is terrifying.

How do I write about how little I trust myself with hope buried underground; where is the autopilot in standing still. In forgetting my own history. Of feeling lacking for too long, waiting to prove myself right. When words will not stay under my pen.

Where is the poetry in exhaustion, in tiring of being tired; when steps require waiting and there is nowhere to flee; lost in myself. Filled with far too many I don’t knows. When there are no questions or answers. Just absence and a grief for what I fear will not be. I bury my hope. To keep her safe. She sends herself further underground.

She loses her words, only left with a distant moan; afraid she is hoarse from years of screaming. Is stillness any different from giving up — when focus is lost and words are weighted down by weariness.

Will words convince a brain trying not to move too fast? Lest it be seen after far too many attempts at its silencing. Where do the words go when she is gone? Is there a story in standing still, in forcing movement?

I am impatient with absence. With presence. With a fog that will not lift. That threatens with uncertainties and lingering fears waiting to be proved right.

Who will pilot this vessel through the storm, against the rocks, into a deep starless night?

Down the rabbit hole

This is the first entry in perhaps a series of blog posts about my 10-day psychiatric hospitalization in May 2016.

This is me, sitting in Dr. W’s [my therapist, a clinical psychologist] office. Last week, she poked at me until I cried [metaphorically with repetitive questions and empathy]. I suppose there’s no good way to ask your patient if they’re suicidal. She asks me again this session, and I keep answering her queries with too specific details.

I trust her enough, so I tell her what I know: That I’m afraid I’ll stop being careful, have a lapse in thinking [in wanting to be done], and I’ll find myself in traffic. Halfway through session, we stop working and Dr. W starts calling inpatient units and day hospitalization programs.

I’m scared. Hospitalization (“a higher level of care”) was never an outcome I, who took medication as prescribed and went to therapy regularly, expected. But here I am: She calls, then explains to them (“autistic, very high-functioning, my patient…”), and then reassures me. We repeat this pattern, until Dr. W. finds someone who can admit me the same day.

She makes sure I have a ride and writes down the address for the psychiatric hospital: private, quiet, a rest; I hope. Maybe this is the worst it gets. I’m disappointed in myself and scared. I leave J. a message. She picks up, and I talk about real time, where my depression has gone — is taking me. And I am lost.

J. comes to Dr. W’s office; I see J ask Dr. W. professional questions; I’ve never seen J. the MFT [marriage and family therapist], just my friend, the woman who leads  my writing group. And I am scared. Dr. W. gives J. a plan to keep me safe, and we call another friend (M) to drive me to the hospital. Dr. W reminds me to stay close, to stay safe. In the car with J. She takes me home.

I finish my sandwich — lunch eaten hours later. J gives M. a list of what I should pack — no sharp objects, no drawstrings or laces, simple crafts and books to keep me busy [I wish I would have known only paperbacks were allowed], comfortable clothing. I am going to the psych hospital.

This is scary. M. picks out my clothes, goes through my purse from that day — tosses out possible contraband. I keep talking, trying to steady myself in this new reality. We make me a list of phone numbers before we leave [my close friends, my clinicians, and the cafe proprietor]: “All these people care about you Big Time!”

We get in M’s car, and I promise to make her stop if I feel the urge to jump out (her child locks don’t seem to be working, so this is our contingency plan) — this is terrifying. I talk; M. drives. This doesn’t feel real. I don’t feel real. We reach the gates.

I get out of the car. I fill out intake forms and high-five M. for the boxes I don’t have to check. [What insight I still have — into myself and my mental state — feels valuable.] I wait. M. stays with me. The nurse arrives, and we fill out more forms. Neither M., nor I, are prepared for this, but we try. To be calm, even lighthearted. I am checking myself into a psychiatric hospital — dear god. M. leaves and promises to contact those who need to know.

I sit my iPod. The electronic Irishwoman reads the Bloggess’s Furiously Happy to me. I get a cardboard t-Rex out of my [coping skills] bag. The bag with the rainbow of hearts on it. I wait with a sack lunch from the hospital fridge, a well-needed dinner. I distract myself the best I can. I meet with the social worker who describes my patient rights and then another nurse. We walk to the unit. It is late.

I show an MHA [mental health associate or psychiatric tech] my body, dressed in only a sports bra and underwear. This is for my own safety: checking for injuries and hidden items. Because, as my paperwork states descriptively, I’m a danger to myself. This is the beginning of my vulnerability.

She tells me to run my finger along the crease of fabric under my breasts. I’m not hiding anything. She is professional. We perform our roles well. I sit at the desk with the unit’s night nurse who fills out more paperwork with me. She is kind and reassuring. [I learn later that this nurse works with children too.] I am scared and exhausted. The unit is quiet.

This is Wonderland.

 

After Wonderland

“I’m free,” I thought to myself. After 10 days of fewer choices and disempowerment, I am returning to the regular world of normal people with fewer visible mental health problems and mental illnesses.

But I don’t feel free. I feel lost and without power. I exchanged one set of problems for another. I want to tell the uncaring folks — the too busy and too tired to care more than they are legally bound to do so — to go fuck themselves!

Anger is so much easier than sadness. Because sadness is what sent me there. I hurt until I am numb. Find my tears again in the safety of another mother’s phone call. Not changing, just listening.

I met so many women like me — there are only so many reasons why our brains give up on living and take us down with them: anxiety, depression, trauma. But did anyone tell you how brave you are? For living, for signing your fate away to a locked ward. For losing your safety and yourself to try to stay alive.

To submit yourself to an uncaring system, to learn to live with pain, to find a community of women in pain, struggling through just like you. You are brave merely for trying. For giving up your freedom to find it again. You are finding your own answers, asking what do the labels mean. Do they matter? Do I matter?

What if we are talking ourselves into nothing? I can no longer listen to bullshit words that hide the truths we are too afraid to witness. What if we are broken and that’s okay? What if we are a days missed pills away from another breakdown? I saw another patient on the bus — more lucid, more herself — her pain, her struggle, was louder than mine.

My anxiety, my depression — the pills I take to prevent an attempted murder by brain. I am so much closer to the edge than I like to realize. I am learning to trust doctors again — to insist on my words mattering, that my quiet voice and unspoken fears be heard. That my trying (sometimes failing) is brave enough.

Perhaps bravery is persistence. Another crying phone call. Sitting with the numbness — emotional bubble wrap. Being brave is accepting that existence is exhausting enough. Bravery is saying aloud, I don’t trust you, as I sit across from my psychiatrist and her sitting there listening, believing me. Being with, acknowledging and understanding, not explaining away the hurt.

My therapist thanked me when I explained how little I trusted professionals like her. She kept room for hope, while understanding my sadness. I wept and cursed; she listened. Holding space. Instilling hope. These are clinical skills. But this is also being human.

I left today’s session with unexpected hope. I described a fire that burned away my trust. But seedlings keep finding their way to the surface. Perhaps we will nurture this fragile hope — with water and time — patience and soil — compassion and sunlight —  together.

 

Dear shame, an open letter to April

Dear shame,

I’ve written you a lot of open letters lately. But today I declare in a soft, yet confident voice, get thee behind me. Shush. Fuck that. No more. You persist, but I ignore. You mock a generation of women like me — too much, not enough. Too late for you to be yourself. But wait. Listen to those who talk back to shame in its illusive forms. Who dare to declare themselves good enough, in-progress always, works of art.

No more, we shouted together. Retelling our stories into being; believing the contagion of voices. I believe her. I believe we. I believe in us. In community. In life. Here together. Fitting, belonging. Becoming until our seams are worn and our fabric tattered. We are here together. Being. Belonging. Together — ourselves.

Until our poetry becomes a chorus of voices and signs and symbols never before experienced. Heard. Understood. Hear. In this place. Fit. Belong. Linger in this hyper-reality. A 1-act play. This is an invitation, to be here in this present moment sharing truths we needed as little girls hiding in their rooms until the howling stopped. Until the violence paused. Not ended. We mourn together, until mourning comes with tears of piss and vinegar.

No longer alone. Here in this place. Together. Fitting. Belonging. Becoming what we never believed. We are anomalous survivors, you and I. Unicorns and Nessie. The less than 1 percent of folks, these women like us. Flapping with joy. Soundlessly clapping. Hands back and forth, bracelets jingling. Our tapping fingers sing in eighth notes. We join a symphony of voices.

Your own. My own. Computer generated, voiced, signed into being. We are here now, for one another what we always needed. Ourselves. A community 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.

I am / I am not

I am here — this I know — and yet I am not. My feet hit the ground, while my brain travels further away; to worries of what will be — to what is not yet. I am okay. I am not okay. I no longer know what that word means. I’m trying to describe a state distant from myself. Could we avoid that dialogue entirely?

I am a writer. I am not writing. Not for me, but for a broader scientific voice. I’m not ready — for the morning to come again — for the night that lingers. I want to see outside myself. I am too far buried in this ever-present tired.

I am not fast enough, I fear. I sit with an unfinished document — ideas explored at the surface level. I am not me. I am coping and doing and telling myself the things I need to do. I am lingering over spaces — with lengthy pauses between actions.

I am not sure how long I will feel this way — a low battery — a flickering light — a buzzing hum. I feel the words coming more slowly, processing at a pace that feels heavy. I am unsure. I sit with scribbled words, trying to name a state I’d rather see leave. But it is absence. I find myself again in these fleeting moments of connection.

When the words return and I find release.

I am lost in this space of wandering through, wanting to simultaneously reject and claim the names for the milemarkers. I am here. I am not here. Uncomfortably far away from myself, longing to return to a place I recognize. I map my journey so far; longing for patterns and sensemaking. Where I made a wrong turn — settling into metaphors of storms and roads.

These intentionally drawn diagrams try to show me where I am. In the all-too-long middle. In what I fear will never be. I am not sure of myself anymore. I’ve been derailed a series of times — only to return here — too fast and too slow — utterly overwhelmed, then exhausted.

I don’t know how to be here, but I am nonetheless. I am unsure of present — future — will be. I don’t trust my words to adequately describe this space. I fear I am not enough for this. I want to describe what I cannot name — to say it aloud would be to enter a place of not knowing.

I see myself going through the motions, wishing for more explicit directions. A model to follow. A certainty I wish I believed. If / then — a recipe for what next. A paint by numbers for a life I’m still exploring.

I am working through; I am managing — still trying to understand these concepts. Sometimes dialogue feels like Mad Libs. I fill in what is expected. Unsure of how to further describe this weary silence.

 

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.

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.

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

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.

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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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