Ask an Aspergirl

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

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.

 

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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.

 

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.

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.

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.

 

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.

 

On tessering

“How are you?” It’s a question that begins most of my conversations these days; I’m never quite sure how to answer. Most of the time, it seems like an acknowledgement of the other person’s existence, not an inquiry about our deeper feelings.

This is not the time for me to unpack my emotional states or the worries I’ve tried to quell all day: How I can’t seem to shake the idea that something is wrong with me and my subsequent actions are making me feel worse. How I often wonder if I’m missing something. When I fear I’m not enough.

This is merely a time for social niceties. When I respond with “okay” or if pressed further, with “managing.” Managing what exactly? The world around me? My own anxieties? Because both tasks seem daunting.

What if I’m tessering? But that response would require greater context. I would like to look outside of this exhaustion and fears that I’ll always feel this way — to see a kind of hope, a will be that hasn’t arrived yet. In A Wrinkle in Time, tessering is a more efficient form of travel between time and space, but the in-between still hurts. That’s where I am now.

“What if you stopped contingency planning?” she asked. What would it be like to just be here? “I don’t know,” I responded. Because this is the space I’ve inhabited for as long as I can remember. I don’t know how to be in the present without looking further ahead and subsequently worrying about how things could fall apart (because of me). Self-doubt is vicious.

Some of this is ableism. I’ve internalized the norms of a society that doesn’t recognize disabled experience as a way of being in the world. So when I’m utterly exhausted, it must be my fault, and I should have coped better (forgetting how much harder it is for me to steady myself).  There are fewer models for graduate students like me. I’ve mostly learned to self-accommodate; I create structure when I can (wishing more was in my control) and seek help in coping with my anxiety. I take meds; I attend therapy. But I’m still tired.

I recognize that this weariness is normative among graduate students, but it seems to hit me harder than others. I’ve reached the end of yet another exhausting semester where I’ve pushed myself to keep writing and breathed my way through shutdowns. When I’ve just stopped because my processing was too slow to continue working. When I feel lacking as a grad student. When I fear for what’s next for someone like me. For me.

I keep an ongoing mental list of the things I’ve managed to do while anxious and/or exhausted. Sometimes reviewing this list helps. In the middle of things, there isn’t an endpoint, a definitive will be if I follow these steps. I’m tessering because I’m not completely certain of my destination. I hope for what will be in the midst of not knowing.

I feel pressured during these holidays to gather myself back together. To rest intentionally and then return to school ready to write (and ignore my feelings). There must be an in-between, but the “how things got better” narrative dominates. I’m afraid to admit when I’m still struggling. What if my academic supporters lose patience with me?

Perhaps more graduate students like me are struggling to balance self-care and productivity? Maybe even wondering why they’re still pursuing a goal that feels so abstract? Are we hiding out of shame and self-preservation?

For me, sometimes hope means worrying about the future. Because that action assumes I’ll find my way through now. Sometimes the best I can do is to acknowledge both realities: that I don’t know how my exhaustion will resolve, but a future where I’ve cared for myself and completed my PhD exists. Maybe I’m even earning a sustainable income in a context I enjoy. Maybe.

I imagine myself looking at a door to a world parallel to my own. Where what will be exists and hope lives. I stand in its entryway as I remind myself, “You are doing the best you can with the resources that you have. That’s enough. And so are you.”

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.

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The Little Explorers Activity Club CIC

Horse Riding for All Abilities

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life as an autistic (former) grad student

17TH AND DUTTON

AT THE INTERSECTION OF BEAUTY, BEER, HOPE AND HEARTACHE

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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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