I live for the 3rd

Wake up wake up. It’s the third of the month. Got my deposit last night, can pay the phone bill all right. Nobody’s gonna tell me We don’t know what to do with you. I don’t wanna hear We don’t know how to help you. I don’t know what to do but I want your ears not your mouth. I can figure my own way out. I may get a guvment q but I ain’t living with mama or workin for a defense contracta. You dig my new style? I been watchin 8 mile. Rhyming while waiting for the bus, can’t drive cuz my brain made a fuss.
My brain left my body at the least opportune times with no one manning the controls as I tried to ring up on the register put in the code to turn off the Alarm every morning.

  • We don’t know what to do withi you is what my cousin’s sister in law said her brother, married to my cousin, said to her when she was staying with them. No job, no marriage, no family of her own. I felt angry and hurt but also helpless because there was nothing I could do.

I’d rather be homeless than work for your insults.

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Unplottable

I woke up slowly
Late morning sun seeping in
Through the curtains
In an antipsychotic haze.
There was no time to work on my creativity
I thought, peering out
At the cold light.

Outside the parking lot was a sea of crumbled glass
Blue green and gray,
My window gone
Just a few small pieces remained
And a rectangular empty space
From which music once played.
On the passenger seat rested a screwdriver
The only evidence.

No time to call the cops.
I was running late.
This was already the third home
They’d sent me to
After the guy who ran away
Who scratched me with his fingernails
When I tried to get him to come back home
After the one who threw a glass at me
The one who thought I was a new client.

These guys I was going to see now
Couldn’t talk
And I worried I might be molesting them
As I changed their diapers.
I was still in my overmedicated state
As I reached the street
Still in shock from the morning’s crime.
In my haste to leave
I’d forgotten the scrap of paper
With the address.
4219 I repeated to myself. That’s it
As I passed 4215, 4217, and then
Wait.
I’m not sure how this happened
Because houses on a street don’t skip numbers
Do they?

I saw 4300 next
Turned around.
In my head the psych resident said
That word
Schizophrenia.
A life sentence to homes similar in a way
To where I worked.
Young people my age started to get it
In their twenties
A progressive disease.
We’re waiting to see if you get worse
She denied saying.

I went back up and down the block
Several more times counting house numbers
Not seeing the one I needed.
I became convinced
That I was in the midst of psychosis
That the house was really there
But I was having a delusion that wouldn’t let me
See it.
I got more and more afraid
Each time I turned around.
Finally I saw no choice but to give up
Go back to the office and tell them.
They’d have to understand.
If I was schizophrenic it wasn’t my fault
After all.

C. Arlaina Ash 2016

Now what?

Can autism be a way to retreat from society? I just typed a long post I thought was articulate and brilliant, and WordPress didn’t save it. One of the stereotypes of Aspies is of computer geniuses like Bill Gates. So one might wonder how I be autistic if I can’t understand WordPress and can barely type this out on my phone using suggested text? What if I have Luddite tendencies instead?

This is a fantasy, of course. I may only have internet access on my phone, but I check Facebook constantly.  I was doing worse I refused to get a cell phone for some reason such as the signal harmed your brain and it was bad for the environment. The therapist in had then replied, “But it’s okay for Gina to have one?” Gina (her name has been changed) was leader of the intentional community for mental illness that I was then a part of. I had given Gina’s number to my therapist as a way to contact me.

I would sit on the couch in the community apartment, a blanket wrapped around me, and watch movies. One movie I watched several times was Nell. I identified with Jodie Foster’s character. I fantasized about being a feral child, outside of society.

Yesterday I was trying to explain to my current therapist my desire to retreat, that I liked to think I was different from other people, that I was more like an animal, a child of nature. She asked why I didn’t want to be part of society. I said the fact that I hadn’t lashed out at her verbally and yelled at her when she didn’t understand showed progress, even recovery.

I couldn’t see myself but I think I got a faraway look in my eyes as I told her the words I’d use to describe it–beautiful, freedom, Romantic (not in the Harlequin sense), etc. She said she was beginning to understand.

In the movie, Nell is thought to have autism, and other feral children are as well. So being apart from society does have something to do with autism. I can’t have it as a goal to be like them. It’s too late to be raised apart from society. And I’ve read that there was really no such thing as children living in the wilderness. They were actually victims of severe isolation and abuse. They are thought to have always had severe developmental disabilities. I shouldn’t romanticize them.

I think the conversation with my therapist was a breakthrough. I told her one of the things I’ve been thinking about — that I can live out my fantasy of leaving civilization vicariously through books like Into the Wild. Or if I can’t concentrate enough to read, I can watch the movie m.

I can work through my anger that he doesn’t survive and that as a woman it would be harder to live like that for safety reasons, such as the danger of being raped. My therapist said she’s read the book.

I don’t want to be using my new diagnosis as an excuse, but I don’t see recovery for myself as joining the mainstream world of career and family.c__data_users_defapps_appdata_internetexplorer_temp_saved-images_jodie-foster-nell-1994-bpf06t

On the spectrum, or “What’s one more label?”

Five hours of neuropsych testing has confirmed what I’ve long suspected: I’m on the autism spectrum. I’m feeling relief, but also like it’s too good to be true, or that I somehow manipulated the doctor into giving me this diagnosis. There’s a whole community of “neurodivergent” people, many of whom don’t consider there to be anything wrong. They just have a different way of looking at the world.

That’s what a psychology grad student had said years ago at the psychiatry clinic on the edge of campus, right by the fraternity houses.

I line up my pill bottles in the bathroom cabinet. They don’t all fit on the same shelf. Seven, plus a prescription sleeping pill. Only three are psychiatric meds, though, and one prescription comes in two different bottles, because I’m at a dose above what the FDA recommends.

My mother carried a bottle of Depakote in her purse, swallowing one of the fat pink pills only when she felt she needed to. She acted like she was being persecuted because of her religious and political beliefs. But she cooperated enough to have a psychiatrist and a case manager—who she called a “good friend”—and to fill her prescriptions even if she didn’t take them. She refused to believe that she had symptoms of psychosis.

When I dropped out of college and started going to the hospital for outpatient treatment, they thought I was in the early stages of developing schizophrenia. The young female resident said, “We’re waiting to see if you get worse.” Even now, I’ll sometimes dream I see things no one else can, like some type of squid-like monster in the bathtub, and think in the dream that it means I’m schizophrenic, and try not to let anyone know I see anything unusual, as though keeping it a secret will keep it from being true.

The summer after what chronologically would have been my junior year in college, I was staying with members of Campus Crusade for Christ, and getting hooked into the conspiracy theory books they had on a bookshelf. I took these books and the theories within them about the Illuminati and one-world government and one-world religion to heart, while the girls said they just kept them around “to laugh at how extreme they were.” I was also upset that my friend had a boyfriend. I liked her boyfriend and was jealous. I told her I liked him, and she said she “felt threatened” by the fact that I said I wanted to be friends with him. Even though she’d tell people he was her friend, and told me she didn’t even think she liked him. I was angry and would yell at her. This understandably freaked her out. The combination of those two things pushed me close to the edge.

Then the final straw was when my ex-boyfriend started dating someone else. I was on Zoloft then. I told my ex that I didn’t think it was working. I’d gone on to him on the phone comparing my life to the movie Amadeus, which I’d first seen with him, saying that my former friend, the one who I’d had the love triangle with over her boyfriend the previous summer, was Mozart and I was Salieri. She had the talent and was also small and adorable and charming. Impish and childish. A sweet innocent little flower child. My ex-boyfriend stopped me and said, “Are you sure your medication isn’t working?”

He said I’d been talking for more than half an hour and still hadn’t asked him how he was. He said usually I’d call, and I’d “rant,” and then I’d eventually stop and ask how he was doing, and he’d say, “Doing ok.” It could be that the antidepressant was making me manic. That’s if it’s true that I’m bipolar. The neuropsychologist didn’t think I was. But that’s not his area of expertise. I said he hadn’t seen me off my meds. After my ex chided me for not having asked him how he was, and he got a painful “Sorry!” out of me, and I did ask, he said that he’d gone out and played pool with a woman he’d sat a shift with at the student-run crisis line where we met and would sit shifts together. I said, “I didn’t know you were a pool shark!”
A week or two later, he called again and said, after I’d probably ranted about my problems, “I have some news that I should probably tell you. I’m actually dating someone.”

I asked if it was the woman he’d played pool with, and he said it was. I think now that he was trying to break it to me gently. Like the joke where the guy has his friend watch his cat while he’s on vacation, and when he calls to check in, his friend tells him the cat died. The guy gets angry and says the friend should have prepared him in stages. First saying “He’s on the roof, but the firemen are getting him down,” then “He was injured when he fell, but a brilliant surgeon is doing all he can,” and so on. Then the guy asks his friend—or maybe it was his brother—how his mother is doing. “She’s on the roof, but the firemen are getting her down…”

While I was on the phone with him I took it well, but I started getting upset as soon as I’d hung up. I hadn’t learned the “skills” of “emotion regulation” then. I believed in being authentic to myself and my feelings, and being in the moment. The problem is I couldn’t get out of that moment, even when I wanted to. I didn’t know about the boring and irritating word recovery then. I wasn’t very goal directed. I’d come back to my room in my student apartment after an unfruitful evening at the library trying to work on my first paper for the Virginia Woolf class I was taking. If I’d stayed there and persevered, or at least until the library closed at midnight, he would’ve gotten my answering machine.

I couldn’t sleep. I felt like crying all the time but couldn’t. To make matters worse I’d just had my weekly counseling appointment at the student health center. I called a crisis line. Not the one where we’d met sitting shifts together, but a national one. I seem to have gotten the same woman who I’d talked to when I was upset about the fact that my ex and I were still cuddling, holding hands, giving massages, even kissing on the lips with no tongue, though we were “friends” now. I thought at the time I felt guilty, though now I think maybe he was using me, or maybe he didn’t know he was using me and didn’t mean to, or maybe we “used each other,” as his new girlfriend told me. It could be that I am asexual, and that was the level of physical intimacy I liked, while he wanted more. I’d been telling the woman on the crisis line about it, and she’d said, “So you don’t want him to be your boyfriend, but you’re acting like he’s your boyfriend?” Which I thought was judgmental.

This time when I said I wouldn’t get to see my counselor again for another two weeks, she just said, “That’s a long time.” And when I finally asked what I should do, she said, “Don’t call him.” In our training protocols at the crisis line I’d worked on previously we were taught not to give advice, so that was unprofessional of her.

When I finally got to see my counselor again, we made an appointment to see a psychiatrist who put me on Risperdal, to help me sleep, they said. And I was on Depakote, those same fat pink pills my mother would play her stupid games with. It made me nauseous. But I couldn’t even throw up to make the queasy feeling go away and bring relief. Once I was at a coffee shop across from the university. I felt a wave of nausea coming on so I ordered hot mint herbal tea and went down to the basement to lie in the nook. When I came back up for more hot water in my mug I saw my ex and his new girlfriend. I’d heard a cello playing when I was downstairs but now I didn’t find it’s sweet sad tones soothing. I put my mug in the place for dirty dishes on a counter by the cream and sugar and left.
At some point, I talked them into taking me off Depakote. I was still on Risperdal and Zoloft, and stayed that way as I left the Student Health Center when the director said I was beyond what they could do for people.

The director showed me what she’d written on the referral to the hospital: that I was experiencing symptoms of psychosis. I was angry and asked why she wrote that. She said it was so I could get seen sooner. That probably was the beginning of them thinking I was starting to get schizophrenia. And I was at least getting paranoid about the Illuminati one-world government and antichrist stuff I’d read about in the Campus Crusade house—holding the dollar bill up to my counselor, pointing at the pyramid with the eye, and asking, “How do I know you’re not one of them?” I was in my early twenties, and they thought it was my first breakdown. I think I always had the problems, something that may get addressed now that I have the official autism diagnosis. But often young people begin developing schizophrenia in their early twenties, often when they are away at college. And having that diagnosis probably was a lifesaver.
I may never know for sure, but I’d guess that the reason I got disability on my first try, within a couple of months of applying, was that schizophrenia, or at least psychosis, was in my chart.
When I was told over the phone that I was considered disabled and would be getting benefits, the man on the other end of the line said that I’d have to have my money managed. I said I’d always managed my own money and knew how to do it. “That’s not what your medical records indicate, ma’am,” he said. I asked what my medical records said, and he said he couldn’t tell me because it could be detrimental to a patient’s mental health to find that out.

The neuropsychologist asked me why I was on disability. I said I didn’t know, but said it was probably for schizophrenia or psychosis, which I don’t have. I said I would like to try to get my records to know for sure.

“Good luck with that,” he sa

Fishing for Answers: An Exploration of Disability and Identity

One Sunday morning driving home from my graveyard job, I stopped at the Unitarian church to see what the sermon was about and consider whether I wanted to stay awake long enough for the service.
Here’s the gist the story I heard:
An American executive is vacationing on a small tropical island. He meets a fisherman living a simple yet happy life. He has one boat, with which he catches enough fish to survive, and a beautiful wife, with whom he watches the sunset every evening. The executive suggestions how this man can improve his life: Invest in a fleet of boats so he can catch more fish, turn a profit, hire more fishermen, and create a company in which he sells fish to people in other countries. He can become rich and live in Europe or America.
“What then?” the fisherman asks.
Then he can retire to a small tropical island, watch the sunset, and fish for fun.
The moral of the story is supposed to be that the fisherman already has all he really needs, without the stress and effort. This story upsets me; it talks about the ideal life that can be achieved without work. Or at least what society considers work. In some ways, it can be said I live this supposedly idyllic life. I have a one-room apartment with electricity and running water, but no TV or internet access. I go to a community art studio or to therapy appointments. I volunteer as a peer support worker at the psychiatric hospital. I get a monthly Social Security disability check that pays all my bills. So why would I want to change? Why would I want to go back to school or get a job?
My mother also lived this way, for most of life. She had a two-bedroom house with barely enough room for me and my brother to visit on weekends. She had electricity, running water, TV but no cable, and, except during the time when she was married to my stepfather, no internet. She had a cell phone, but didn’t use it often. She dressed modestly in long dresses. She volunteered at a soup kitchen and clothing bank. She had conservative religious beliefs that worked for her. She was diagnosed with schizo-affective disorder but didn’t get proper treatment, because she didn’t believe she had an illness. She’d carry a bottle of Depakote, only one of the medications she was prescribed, in her purse, taking one every once in a while, instead of as directed by her psychiatrist. She lived on my grandmother’s support until after my stepfather’s death, when she applied for disability.
The story scares me because I see the parallels between the lives of the idealized fisherman, my mother, and myself. I’m afraid I’ve fallen into a pattern of being outside of a culture that works, goes to school, and is competitive. While there are benefits to a life outside of the mainstream, my mother’s extreme religiosity, and her noncompliance with a psychiatric regimen, concern me.
I first got the idea to go on disability when I was in high school, though I didn’t know that was what it was called at the time. I was talking with my lab partner and sometimes-friend Erica. I felt powerless because I was bullied all the time, and didn’t fight back like she said I should. I lacked the will to live, which came from dealing with my mother’s repeated hospitalizations as well as having no friends at school. I told Erica there must be some government program you could get on if you couldn’t support yourself and didn’t know what else to do, if you just didn’t know how to survive. She said I’d have to prove I was a loser.
I began to seriously consider disability as an option when I had a roommate who’d lived in group homes before we moved in together. She was on disability and went to psychosocial rehabilitation. When I moved in with her, I had dropped out of college and was working, first at a used clothing store and then in group homes for people with developmental disabilities. I think if I had those jobs now, I’d tough it out and complain in a blog. I tell myself I wouldn’t quit unless I was fired. At the time, though, I was struggling and trying to figure out what was “wrong” with me. I began to wonder if I was, in fact, a loser.
I envied that my friend didn’t have to work. After I freaked out and was let go at the last home for the developmentally disabled, I told my step-aunt that I was going to be on disability. She said to fight it; try to get another job. She said I didn’t want to end up like my roommate. “She’s not healthy,” my aunt said.
The manager of the group home offered to write something on my disability form. The hospital psychiatrists wrote in the form as well. That’s how “psychosis otherwise unspecified” got into my chart. I didn’t have a hearing, just filled out paperwork at the Social Security Administration where  my case worker restated something I’d said: “I certify that my work history has always been sporadic.” I’ve since learned I was fortunate; most people are denied and must appeal multiple times.
I was staying in a women’s shelter when a representative from Social Security called to say I’d been approved. However I didn’t like when he said I needed my money managed. I argued that I could handle my own money.
“That’s not what your medical records indicate, ma’am,” he said.
I asked what my “medical records” said. He said it was detrimental to a patient’s mental health to learn their diagnosis. This causes me to remember the psych resident at the university hospital where I was being seen starting when I’d first dropped out of college, who’d noted that fact as a sign of mental deterioration. She’d told me people usually begin developing schizophrenia in their early twenties, and that they were watching to see if I got worse. What the doctor said had scared me. I’d never met anyone with schizophrenia who was leading a full and rewarding life, though I have met people like that now. In the back of my mind, always, was the fear that I would end up like my mother. My mother didn’t have the auditory or visual hallucinations associated with schizophrenia, though she did have delusions, such as that she was pregnant, or that my stepfather had come back from the dead.
Added to these fears now was the feeling that I was being treated unfairly like I was incompetent, now that I had the life I thought I’d wanted. When I’d still been struggling with employment, my former roommate’s life full of classes and outings had sounded appealing, but now that it had become my reality, I found it degrading. I went with a payee agency that talked me into cooperating, saying if I fought it, it would delay my benefits. I’d reached the shelter’s one-month time limit. So I got a payee. I tried attending a psychosocial rehabilitation program, but angrily quit when they said I needed a case manager. I went to an art program run by an organization that provided healthcare to people experiencing homelessness, though I sometimes thought the staff were patronizing, to therapy, and to a psychiatrist. I wrote and made art. I participated in online forums for people with depression.
Having become somewhat disillusioned with this way of life, I decided to better myself. I still had notes from college papers. I tried working on them, but my writing seemed too convoluted.. I took the classes necessary to transfer back to the university at the community college. I learned I was still in good standing at the university despite having failed some courses. Then, in an upper division English class at, I learned of a paid internship at the university press. Because I qualified for Work Study, I didn’t have to report my income to Social Security. It was the best job I ever had. I constantly worried about what I’d do after graduation, though. I asked another intern  what to say in interviews about my being on disability. She said to say it was a period of immaturity I’d gone through but had moved on from. I applied for a full-time position, but didn’t qualify because the internship was only a 20 hour per week job, and this job required full-time experience..  I asked the other intern what would I do now. “I don’t know what to tell ya,” she said. She was going to stay in the internship because she was going to grad school.
The Division of Vocational Rehabilitation helped me get a graveyard job at the local newspaper, publishing the online edition. I did well for my first three years there, and then the late-night hours and lack of sleep began to take their toll on me, exacerbating my symptoms. I had trouble concentrating and went from being the most accurate to making the most errors. I also would sometimes cry on the job. The entire time I was working, though I was no longer getting Social Security benefits, I obsessed over whether I should have ever received them in the first place, even wondering if I’d scammed the system. It all goes back to the ever-raging debate that takes place my head about whether I’m really “mentally ill.” The fact that I could hold a job even meant, to me, that maybe I was not. Therefore, I decided to go off medication, the first step in the downward spiral that eventually resulted in my being fired.
I told a counselor about the conversation I’d had with my friend in high school, where I mentioned that I thought I might go on some kind of assistance. I felt bad about having wanted to do that, but she reassured me by saying that children often get career goals from their parents. If your parents were doctors or lawyers, you might want to be a doctor or lawyer, for example. My father was a teacher, but didn’t like it. My mother was a professional mental patient. She said those were the options I’d naturally consider.
I thought about getting back on disability before I lost my job. I sent a Facebook message to family members , titled “Help.” I said  I’d given away many of my possessions and that I thought I might have to live with one of them. My brother replied, “How can I help you?” All I could say was, “I don’t know.” I found it difficult to ask for help when I wasn’t sure what was wrong, or that there was even anything really the matter. Mental illnesses are invisible. It’s not obvious by looking at me or even observing my behavior that I’m disabled, unlike the writers in Staring Back: The Disability Experience from the Inside Out, edited by Kenny Fries, which I’d read in college, who were Deaf or blind, or had cerebral palsy or multiple sclerosis.
I recently got to attend an event where I met local and nationally known poets with disabilities, and be on a panel. The woman who hosted it had written a book of poetry about how her multiple sclerosis was at first misdiagnosed as being merely part of her mental illnesses—bipolar disorder and PTSD. Other panelists also talked about their struggles with mental illness. I got to read some of my poetry and answer questions from the audience. It was a validating and empowering experience. I have found a community of other writers with and without disabilities. While I still tend to isolate myself, I find I am slowly becoming part of that community, where I can explore my identity.WP_20160317_14_17_21_Pro