October 30 2013

“What do you do for a living” There is no question more hurtful, more aggressively intimate, more tedious than this one. Personally, I would rather discuss my bowel movements and have often thought of hitting them off at the pass with some of my own bizarre questions. I do not have job. In Sweden to say you are unemployed is unforgivable. The revulsion is always apparent and it lowers your social standing dramatically.

*

There is no dodging or dropping this question as an answer of unemployed demands a detailed explanation. “Stay at home mom.” Is not a valid answer unless your child is an infant. In any case they would immediately follow it up with “What did you do before?” “What job will you be seeking when you get off your lazy arse and return to work?” Swedish people do not generally work part-time and thus do not regard those with part-time employment in a very favorable light. In the future I hope to get a part-time job. Full-time employment is just not viable unless I can find an effective treatment. This question will no doubt plague me until I am in my 60s.

*

There is really nothing worse than explaining to a complete stranger that you are disabled and how that disability effects every facet of your everyday life. It is much too personal for a first time conversation. I have considered answering I am a writer but I imagine that they will want a recitation of my work, which my horrific memory prevents. Or better still “But what is your real job?” I doubt writer would fly in an extremely efficient, practical country. The only Swedish books I have seen are detective novels (and terrifying children stories) and if you have ever seen Swedish television it is hard to imagine poetry would even be considered a legitimate form of writing.

*

Another question I get asked frequently “Why do you only have one child?” Apparently I am single-handedly responsible for the population. I should answer because my vagina is not a clown car but alas once again I must explain that I have Epilepsy and with each pregnancy my condition worsens. “I do not want another child” is not optional and is considered selfish because any responsible parent should be generating children for the first child’s amusement. Babies are not toys!!! I do not work, how will I afford all these babies if I did have them? How will I care for them properly if in the process of having them I am further disabled?

October 16 2013

I am reading “The Reason I Jump” by Naoki Higashida It is a book written by a 13 year old boy with Autism about Autism. I knew, given my social eccentricities, that I would find a conduit into his world, that I would relate on a more personal level but I did not expect that each page would prove a mirror. The level on which I am able to relate to this youth goes beyond intimacy, I might have given birth to this child through Asexual reproduction. I exaggerate slightly as I do not share his love of numbers. My first love is of course words. Although I did find that when taking Japanese the words did not come to me as easily as the syllabary. Years later I still remember how to read hiragana and katakana despite a pitiful and limited vocabulary. In second grade we had a class on sign language and to this day I still remember everything we learned. Discalculia has perhaps destroyed any love of numbers I might have fostered as I find numbers difficult to accurately perceive but I do love symbols.

*

I too get trapped in repetitious activities. I do not have a particular fondness for the vacuum cleaner but the sound lulls me into a semi comatose state (Sam hates noise so all our appliances are the quietest available versions we can afford). I find myself vacuuming for hours, Sam literally has to stop me and redirect my attention which is exceedingly difficult because I completely flip out when interrupted.

*

I too can walk for hours nonstop with no goal or destination in mind. Walking is a compulsion, a passion, my love of nature is fiercely compelling.

*

I too move at a significantly reduced pace when asked to hurry. I find that I feel out of place in my own body. I am so unaware of my body that I can place my body in some fairly horrific configurations without any awareness of the pain such a position should generate. I can’t ride a bike it is absolutely unfathomable to me how people ride bikes. In dance class I was always the worst student by miles.

*

I can eat the same thing everyday. I once ate pirogis for breakfast, lunch, and dinner for a week strait until Sam threw them away. If I ask for split pea soup for the millionth time, Sam will buy another soup to encourage variety. When I was in college the first time I ate the exact same lunch every single day despite other palatable options.

*

I too run off when something catches my attention, which results invariably in my getting lost. There are times Sam literally places my hands on the shopping cart and them wraps his body around mine to keep me from wondering. While it does make me feel like a child, there is comfort in his warmth.

*

I could go on and on as nearly every chapter is a revelation. While Asperger’s Syndrome explains everything not yet explained by Epilepsy, I am afraid of the diagnosis. I can’t explain exactly why this diagnosis scares me but it does. Individuals with both Asperger’s Syndrome and Epilepsy are more likely to have medication resistant seizures and have a 20% higher risk of Sudep (Sudden Unexpected Death in Epilepsy). My Epilepsy has already proven to be medication resistant I really don’t want to think of dropping dead inexplicably.

*

I think the fear comes from an overwhelming sense of powerlessness. How on earth am I to manage two serious and complex conditions? I suppose I am managing though I have no idea if I am managing well considering or if I am an epic failure. I have yet to obtain employment, which is a quintessential milestone for success. My job experiences in the past are as follows. I worked at the Humane Society with Sam during the summer many many years ago. I was so slow that he had to quickly do his work and then come finish mine. I worked in a ice cream shop for a day but the woman in charge kept screaming at me for being retarded because I couldn’t control my own arm. I worked at Burger King for a week but then wondered off and failed to return to work. I worked at the University Fitness Center this was my most successful job. I had only to clean the machines and it was only 2 hours a day. I was 25, my boss thought I was 17 or 18, when she found out I was actually an adult she attempted to promote me but I did not like the idea of my duties changing. Actually the thought of my duties changing freaked me out to the point I quit the moment she offered me the promotion. I didn’t mean or expect to quit but I couldn’t explain why I did not want the promotion.

October 14 2013

I have decided that I can no longer tolerate ambiguity in my interactions, be those interactions internal or external. I want to be clear about my intentions. Clear about my goals. Clear in my responses. Clear about my feelings, needs, and opinions. I have spent so much of my life in a state of passive ambivalence. I have failed to clarify misunderstandings. I have created misunderstandings. I have lied to myself. I have lied to others.  I have confused myself. I have pushed others away in an attempt to escape myself. I have run away from difficult situations. I have pushed myself into unhealthy situations. I have acted against my own nature and suffered immeasurably for it. I have literally driven myself insane trying to relate according to inscrutable social norms. Norms that I don’t understand and often find awkward and repulsive. In every attempt to adapt these norms I have managed to warp myself horrifically in the process. My goal now is a very simple one I want to be myself nothing more or less. No more mirroring what I see. No more avoiding confrontation when confrontation is necessary. I want to listen to my own heart. Not my insecurities, not my Depression, not my paranoia, defense mechanisms, panic, or fear but my own uncluttered uncomplicated heart.

*

If I had one piece of advice to offer people who are struggling romantically it would be this: People are not psychic and no matter how many obvious and helpful hints you’ve given I assure you they will not get the message until you speak the words plainly (even then it might not be an instantaneous revelation!). Even if you’ve known the person for a number of years you must never assume that your needs/feelings are understood if you have not clearly stated them. Take the strait-forward approach. Match your words and actions as best you can. Be true to yourself. Speak up! Listen! Communicate often.

October 10 2013

Underneath your smile

A meniscus-shaped moon frets

Gathers the fabric

Of an oft-worn cassock

Gathers the shackles

Of an oft-borne albatross

I fill my palms

As if a beggar’s bowl

But is it ever enough?

–

Hubbie is sad =(

October 4 2013

I took this test today at my own speed.  My Aspie score was 168 out of 200. My aunt used to send my mom huge stacks of information on Asperger Syndrome when she was studying psychology.

 

 

My infantile words resolve unjustly to the gallows. I can’t bare to sire anymore aberrations. Next week I’ll meet with my therapist. I’ve given a lot of thought to what I’ll say but no matter how much I prepare myself I will be faced again with the insurmountable task of communicating my feelings. I want her to say you’re not a failure, you’re doing the best you can given your circumstances/limitations. That need for reassurance paralyzes me. That hopeful belief that others might have the capacity to persuade my mind that I. too have virtues. To my mind I am a foreign entity, a parasite, my body disobeys me. I am only at “home” when my eyes are closed. I exist in the color of pressed lids, in a tiny space imperceptible to others. When my therapist does interrupt me, with a helpful and sane explanations for my deleterious behaviors I find myself overwhelmed and confused. Am I exaggerating? Would she prefer if the conversation were more positive? Am I diminishing the significance of my own feelings in order to keep what little independence I do have? Mostly, I am afraid of being called a liar. Liars exaggerate, so I downplay.

*

When I was in high school I was evaluated by a psychiatrist. At that time I was feeling very suicidal. I had tried talking to my mom about my Depression, about the severity of my loneliness and distress but I was unable to get through to her. I felt like my entire future depended on this evaluation, it was my opportunity to speak up for myself. I wanted to be heard. I wanted someone to consider my feelings. I took the test with the intention of full disclosure but I did not understand all of the questions. I have enormous difficulty with negation. I tend to add or subtract nots. I might say to a person in all earnestness “I don’t like you” when what I actually mean is the complete opposite. I have trouble filling in bubbles and so occasionally mark answers incorrectly or miss entire columns. The list of communication difficulties I have is rather extensive but as I speak and write relatively fluently people are often unaware of these challenges. If someone says to you quite plainly “I am bored” you assume that they are bored and if they are not bored then they are lying. Unfortunately I might say “I am bored” when I mean “I am amused”. Sometimes I don’t catch these mistakes and even if I have insulted someone inadvertently they are very unlikely to call attention to the issue. Sam (husband) used to nurse his wounds in silence but gradually he’s started seeking confirmation for mysterious statements. “Did you say I was fat?” I remember only what I meant to say so I am often completely perplexed by his questions. “Why would I call you fat when you’re not?” You can imagine how detrimental this is to social interactions. Conversely I can entertain entire conversations in my head, which are so real to me, that I believe erroneously that they have occurred.

*

Sometimes when people speak to me I am unable to understand their words. I see that their lips are moving but the words are jumbled and incomprehensible. If you ask someone to repeat themselves enough times they become frustrated (angry). Sam has to repeat himself ad nauseam. Which means that he sometimes avoids lengthy conversations. He sometimes feels that I simply don’t care to hear his point of view. This is not the case. Sometimes he will start a story and I am desperately interested to hear it to completion but try as he (I, I made a pronoun typo here) might I can’t turn the “noise” of speech into functional sentences. I find that I come up with responses for conversations hours/days after they’ve occurred, I find myself laughing at jokes after they’ve stopped being funny to anyone else. Sometimes Sam doesn’t tell me jokes because I ruin them by having to have them explained. Sometimes I laugh at the wrong part of a joke or at my own misinterpretation. Keeping all that in mind you can imagine how difficult I find psychological tests to be!

*

During my assessment I would ask for clarification on ambiguous questions and then get reprimanded as he thought mistakenly, that I was fishing for answers. The end result? I failed the test. How do you fail a psychological test? You fail it by “lying”. Even though I had not lied on purpose I had made so many mistakes that the test was unusable. The psychologist chewed me out over it and for years I was terrified to pursue therapy. I felt that I was different but I convinced myself that I was lying for attention, so I did my best to suck it up. I even made up some reasons to explain my behavior. I can’t learn the social norms because I simply don’t want to. I could be popular if I wanted, I am just not that social. That was how I explained away my difficulties. I just had a disagreeable personality.

*

Unfortunately no matter how nice a therapist is I find that I am unable to express myself in a meaningful way. I feel intense pressure to respond rapidly, my long pauses are embarrassing so I tend to fill them up with chatter. I always walk away feeling that I focused on the wrong aspects, that I shied away from an explanation because I didn’t want to contradict the other person or to come across as belligerent. I leave out my more unusual symptoms in deference to their comfort and so as not to complicate an issue they might perceive as strait forward. I fear that my more unusual and worrying symptoms might be disregarded as trivial or worse as some pathetic ploy for attention. When my therapist threw me for a loop handing me the brochure on non-epileptic seizures I could not respond as I wanted. I feel silly going back two weeks later to respond but I am afraid of accumulating too much static, too many misunderstandings because eventually huge gaps and contradictions will appear.

*

My conversations never gather momentum. Sam and I have been having the exact same conversations for years. To me these conversations are often new and exciting, sometimes they are excruciating the pain just as intense as the first 500 times. I can’t imagine how tedious and frustrating it is for him to have to repeat himself. I get stuck. I can’t multitask. I am unable to switch gears. I am obsessive in my interests. Right now my therapist thinks my schedules are healthy and a sign of productivity. She doesn’t understand that I have to follow these schedules. That if it’s meal time people will break their necks in order that I should get lunch at 11 am because they know how upsetting it is to me to get off schedule. I eat with people who aren’t even hungry. I eat when it is 11 am even if I am not hungry. I didn’t go to the Rammstein concert because Sam was worried that with my gluten free diet I wouldn’t be able to procure food or go to bed on time. I miss out on fun things because of these bizarre hang ups. On the rare occasion I do something fun I tend to get very overwhelmed and stressed out. Sometimes I deliberately take myself off the schedules but then in order to cope I will write and write and write. I won’t eat, I won’t sleep, I will go weeks without even having a bowel movement because I am writing. I have lost months to my obsessions. As dysfunctional and obnoxious as my schedule is I am fairly sure I wouldn’t survive long without it. If I miss yoga in the morning my whole day will inevitably decay as I can never make up for that mistake in my own mind. I am a weird kind perfectionist. As a kid I would make people play the same game over and over because I couldn’t stand that I made a mistake. I would write games out for other children because I struggled with spontaneous play and then read the instructions out loud. Sometimes the instructions would take me an hour to get through.

*

I have studied psychology, philosophy, religion, nutrition, and anatomy/physiology all in a desperate attempt to understand what it means to be human. I only understand humans at a distance, up close they are incomprehensible. I can go days thinking Sam is angry at me because I spilled a drop of water and miss the bigger more obvious issues. I think my problems run deeper than social anxiety personally but I have great difficulty admitting how my social incompetence hurts other people. Every minute of every day I am judging myself. Every move. Every word. I hate myself.

September 28 2013

I am not sure if I want a “proper” job. Perhaps I want to write, to dedicate my heart wholly to a solitary pursuit. A pursuit that will earn me neither money nor acclaim. A pursuit that in time might cultivate resentment. I have never been practical or diplomatic. I regret that I didn’t write more often as an adolescent, that I didn’t hang on to writing assignments from childhood. I remember at times my thoughts and in all these years the content has suffered very little alteration. How is it that at 5 I was given to such complexities? How is it that at 32 I have resolved so little? I regret most of all that a lack of confidence has kept me from pursuing my passions, even privately. That that same soul-devouring infirmary has caused me to discard previous endeavors. I amputated myself from the neck down. Sometimes a head, at other times a heart, but never both simultaneously.

*

I fear time, she alludes me. How can one simply subtract four hours from a schedule that already overwhelms (though is comparatively meager)? My apartment remains even in surplus of time a mess. My head likewise. With weekly therapy, swim classes and the addition of enrichment activities that consume entire days I am no longer feeling under-stimulated. I sat in a room full of strangers today. I sat with my limbs curled around my trunk, exhausted but permeable wishing desperately that I was the one dancing. Longing desperately for the warmth of home.