Ask an Aspergirl

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

Tag: close enough to normal to get by

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

Conversational rhythm

Just another day

I find myself counting between responses in 3/4 or 4/4 time: I can see the orchestra in my mind of eighth notes and quarter notes, as I try to find the conversational rhythm, those pauses between statements and breaks in between. I was in choir for years, so conducting myself isn’t a exactly a new skill; I just never expected to use it to help myself manage  unfamiliar social situations. Strangely enough though, my listening for people’s speech patterns and lengths of pauses helps me to be more mindful of my own conversational style. I even wrote a poem about this process while sitting at open mike night yesterday:

Conversational rhythm

In this listening along, there’s a moment where one sees the conductor motion toward you to play: I answer the question or respond as needed. I watch the music [pace of the conversation], so I know when to come in — noting my entrance, right after I meet my professor’s eyes. By making direct eye contact, which is something I tend to avoid in lecture style classes where it’s just easier to listen without adding extraneous visual stimuli, it’s as if I’m asking permission to join the discussion. So far, this strategy is working relatively well in class: I feel slightly more comfortable speaking my mind and tend to be less likely to interrupt fellow students’ sentence. Missing those nonverbal cues sometimes leads to interrupting if I’m not conscious of this tendency.

Conversational patterns and rhythms became part of my existence without my realizing it. Novel situations are the hardest for me.  It’s like playing with a new music ensemble for the first time — first rehearsals are difficult for everyone.

A wise friend to whom I was venting this week reminded me to “Continue to self monitor what the ‘music’ of the room is. What instrument am I? Think beyond yourself during this process — more than just me in this orchestra.” She embraced my metaphor for the confusion I felt in finding my place in novel social environments and helped me to process through the situation before saying that.

So I suppose for now, to quote Natalie from Next to Normal as she sings “Maybe”:

“I don’t need a life that’s normal
That’s way too far away
But something next to normal
Would be okay
Yeah, something next to normal
That’s the thing I’d like to try
Close enough to normal
To get by”

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