Dear, my friends… [An Open Letter]

Dear friends, acquaintances, readers, passers-by, and whomever else it may concern,

It has been over a year since I travelled to the psychologist’s office to receive the results of a battery of tests I had to endure to gain some insight on myself. When all was said and done, I was given a total of two major diagnoses based on DSM-V criteria:

  1. Major Depressive Disorder, Mild recurrent with anxious distress features
  2. Autism Spectrum Disorder

Along with diagnosis number two, the more important of to this letter, came the following information:

  • Social communication requiring support
  • Restricted, repetitive behaviors requiring support
  • Without accompanying intellectual delays
  • Without accompanying language impairment

I think everyone on some level has some idea of what Asperger’s syndrome is, but I want to be clear because everyone, literally everyone, with Asperger’s (now part of the Autism Spectrum as of 2013) is different with a few diagnostic criteria in common.

  1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by 1) deficits in social-emotional reciprocity, from abnormal social approach and failure of normal back-and-forth-conversations to reduced sharing of interests, emotions, or affect 2)Deficits in nonverbal communicative behavior used for social interaction ranging from poorly integrated verbal and nonverbal communication to abnormalities in eye contact and body language or deficits in understanding and use of gestures, to total lack of facial expressions and nonverbal communications. Finally, 3)Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts, to difficulties in sharing in imaginative play or in making friends, to absence of interest in peers.
  2. Restricted, repetitive patterns fo behaviour, interests, or activities, as manifested by at least two of the following: 1) Stereotyped or repetitive motor movements, use of objects, or speech, 2) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour, 3) Highly restricted, fixated interests that are abnormal in intensity or focus 4) Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment. (Atwood, 2008, p. 11)

That’s the clinical language surrounding it. If you made it this far, perhaps you’ll be willing to go a little further with me…

Most of what is listed above is true for me. For 30 years I didn’t know any bit of the way I acted was atypical aside from the fact that it made me an outcast in junior high and high school which made me very cynical after I graduated. Throughout that period of time I was also battling major depression on a fairly regular basis with little or no relief from medication, though I was tried on plenty of them.

A trip to the psychiatrist’s office in 2006 led to a diagnosis of some sort of mood disorder at first but then was changed to Bipolar II disorder. This led to more medication. Some of which I am still on, though in lowered dosages. The ensuing ten or so years have been hell, dealing with the side effects, the mood issues, the anxiety, and the depression on top of the social stressors I encountered along the way. These included losing two friends unexpectedly, almost losing a third to suicide, and a failed reconciliation with my biological father. Along with that comes a fear of abandonment because of the aforementioned bio-dad, which is the reason I have not pursued a relationship in the last 5 years or so. Feeble attempts have led to my being ghosted on more than one occasion. It just seemed the whole time, even before I was re-diagnosed, that I was not a good fit with most people.

Admittedly, there was a large amount of clarity that came when my diagnosis was updated to Autism Spectrum Disorder (colloquially: Asperger’s). The way I was growing up, the way I am now all make a lot more sense. To this day I still have issues communicating effectively either because I can’t read the tone of voice being used or because I take questions that have an expected response, like being asked my opinion on a new band someone really likes and wants me to like as well, and I don’t give the expected response by being super excited like they are even if they are visibly excited right in front of me.

If you know me at all, you know I love professional wrestling. I can already hear your collective groans as you read this. However, my obsession fits in well with the, “Highly restricted, fixated interests that are abnormal in intensity or focus”. I don’t watch the big names all that much anymore, but I have found a wealth of independent wrestling on the internet. I know the names of moves, I know the history behind some of them, as well as wrestling history in general.  I can tell you who trained who. I can identify the different styles used, and I even named my solo music project after an abnormally named pinning combination, The Magistral Cradle.

So, now, at the age of 31, I am living alone and going to school to get a BS in Psychology in hopes of getting into an MA program in Applied Behavioral Analysis, focusing on working with children on varying parts of the Autism Spectrum. I’m at the perfect school for it and I have the mind and compassion for it, I think. When I’m not doing school I’m on my feet for 4-8 hours a day as a Pharmacy Technician which, having Asperger’s, is surprisingly smooth sailing because a lot of it is just repetitive actions, phrases, and tasks. Now if only I could find a job with more hours and pays better. But that’s not really why I’m writing this.

Aspy’s, as we are lovingly called, are a lonely bunch for the most part. Every day is like a dress rehearsal, accompanied by generalized anxiety as well as anxiety when an activity or task is disrupted. Even when I’m doing something controlled and repetitive, I have to contend with the idea that, at a moment’s notice, my task will change based on the customer volume. I have medication to control it and it works well, but there’s still that conditioned response of hesitation and reticence that has to be overcome

I am lonely sometimes. I live in a small studio apartment that supplies all that I need for living situations and usually I am content with reading, writing, composing music, or just watching a movie by myself. People don’t enter the equation much when it comes to my thought process. My therapist urges me to seek more social interaction, which is probably the greatest difficulty I have right now. Yes, I have people I call friends but, as an Aspy, there is an inherent difficulty in my knowledge of how to maintain those friendships. Just as I am rigid with certain routines, I can be rigid with my definition of friendship and it’s hard for me to wrap my head around anyone else with a different understanding.

Not to mention, the perception of social cues and voice inflections is almost lost on me. I have to intellectualize both my emotions and yours when we talk which is why I’m not always quick to respond or to come up with answers to thought-provoking or introspective questions.

What I’m saying, I guess, is I really do miss people whom I consider friends but never see. I don’t know if I come off with this persona that I don’t like being around people all that much and so it’s considered doing me a favor by not including me in social activities or get-togethers or if those people just aren’t as good friends as I thought. That last statement is not an indictment but an admission of agnosia. I legitimately do not know and, even more so, cannot discern the answer. I just know some days I just lay in my bed with my eyes closed and sink into a world of my own creation, creating scenarios and having conversations with people, none of which is real. I don’t want to do anything, so I just let my mind wander.

I want to be part of your life. I think I have a big heart and a lot to offer even if my actions betray that sentient. So, my goal in writing this is to inspire you to try to understand what it is I deal with on a daily basis and the things I’m still trying to learn about myself. I still have not learned to adapt. I’m still discovering sensory hyperactivity responses, like chaotic noise, or abnormally bright light. I know not everyone understands that. I know not everyone understands why or has the patience to understand me when I say things bluntly or matter-of-fact without regard to the other person’s feelings. These things might offend you or make you mad. Please know it’s never my intent.

What I’m getting at is, if we’re friends, I’m still here. I’m still on this new journey and I wish you’d come along with me, maybe help me figure out what it means to be an Aspy in a sea of Neuro-typicals. Let’s have some fun. Just, please, don’t try to change me or fix me. This is who I am. This is who I was created to be. Just love me for that and things will work themselves out, I’m sure.

Until then, a certain song comes to mind whenever I feel out-of-place or like I’m on the outside looking in:

Not inferior, just different,

J

Long Lost Letter

I wrote this letter 7 months ago and had forgotten it existed until now. I’m sharing it because there’s a lot in here that I don’t know if I’ve ever shared. Those that know me will likely know who this was written to but the name has been redacted anyway.


I don’t know if this is something I’ll ever shake completely.









Nickel-Cadmium Battery

lightning-night-sky1

Running myself down like an old nickel-cadmium battery
Charged at the beginning of the day but with the energy
Of a twenty-four hour a day memory
Remembering the length of time I spent yesterday
Spinning my heart and mind over the bumps
And creaks my body speaks,
The groans and the braille tell the story
And this hi[s]tory is trapped in the chemical reactions
That give me energy after
Forgetting if I fell asleep the night before
And waking with the pools of my eyes dried shut

Must keep in mind to make the battery run dry
Before feeding it more or it will give me less to go on
Tomorrow.
Or tomorrow will be shorter than the last.

If depression is a rock
And anxiety a hard space
I’m stuck between an ever-narrowing valley
Of the things that broke me
And the things that maybe will
The electricity in my body is running so dry
That the desert of my skin misses
The rain of my body
Dry thunderstorm in no one’s arms

My battery is running low with nowhere left
For this last bit of current to go so I can sleep
And the desire to feed it to you is so short
An upturn of the palms would let it arc
Like I am always the third rail
The pleasant tap on the tip of your tongue
From a nine volt,
Looking out at skyline distance, capturing lightning bolts
I swear for the fleeting moment I was there
And then gone again.
Camera flash
The millisecond passed
Then I was gone again.

A NiCad battery should never be plugged into energy
Until it’s drained of all its stored capacity
Or it builds up a memory
And run out of its electricity more quickly.
I have a long memory.
Don’t plug me in unless you plan on keeping me.

Loneliest Man[ifesto]

write

I thought. I thought again. Some might say I overthought. They say that knowledge is power. They also say true wisdom is admitting you know nothing at all. And even more so, that with wisdom comes sorrow; knowledge only makes one more frustrated. I guess there’s a part of me that wishes I hadn’t found out I had Autism Spectrum Disorder (ASD) after a decade of dealing with the depression, anxiety, and uncontrollable moods of Bipolar II disorder. Being the ever-inquisitive I just had to ask that question, had to needle the DSM thinking there might be more and it turns out there was.

When talking to friends and family about this, while being tested then waiting for my test results, I think the must uttered phrase was, “It’s not like it’s going to change anything.” I said it and I think almost everyone else said it too. The logic I followed was if I have it then I’ve been living with the effects of it my whole life and will have already developed coping strategies and ways around the strange wiring of my brain. Getting a diagnosis would, if anything, only confirm I’m more atypical than most and I could go about my life in as normal a fashion as I typically do.

I was so wrong.

That final meeting with the psychologist seemed almost anti-climactic. She gave me the diagnosis as she was getting up to leave. I will admit I was nonplussed by this because I figured I had the whole thing handled, remember? Life had already thrown me for a loop a million times that surely I could get a grip on this and move on with my life. And I was right for a while. Because I didn’t know anything about what it meant and what the implications would be for me going forward as to how to best manage myself and my life. So, of course, I began reading and studying and learning as only I know how to do and I think I moved too fast to cope for the way the shift in perception would hit me.

Did you ever find out you could do something as a natural ability without any sort of coaching or training, things like wiggling your ears or put a pair of glasses on for the first time after years of not being able to see? Very quickly, my perception of my perception of the world began to change. I learned things about my ability to perceive the world I figured were normal but were actually part of being on the spectrum. I react to every noise, especially in an enclosed space like cell phones, dropped writing utensils, the scraping of chairs, etc. Most people just tune that out either by choice or by their brain’s innate ability to gate that sensory input out.

I’ve never been good in large crowds unless it was at shows. But I went to one a while back and realized I didn’t really talk to anyone. I don’t speak small talk and I never have. If there’s live music playing that’s pretty much all I’ll pay attention to. I distinctly remember watching this one guy just go crazy on an acoustic guitar with this southern drawl slipping into his voice like ice into a glass of whiskey and that’s all I heard. Not because it was loud but because music is something my ears have always been attuned to. When I worked in customer service I used to sneak my headphones in so I shunt out some of the noise from all around me including the irritating white noise generators.

Anyway, I was listening and watching this guy play when I felt a hand at my back. I don’t think I moved at all but my friend’s face came into view. She asked me if I was alright with some concern on her face. I told her everything was fine. That was just how I did shows. She and the other friend I came with went and small-talked with their other friends who rode in separately. I didn’t mind. I’m not trying to evoke some sense of sympathy like they bailed on me or something. They did their thing and I did mine and the show was good.

The hands of the clock have made a few trips around its face and maybe even a page has come off the calendar since then. I couldn’t tell you if things have just gotten worse because I’m more cognizant of everything or if it’s stress from school, but I have not spent a lot of time outside of my apartment. I’ve been invited out once or twice to see a show but the minute someone does there’s this rising panic under my diaphragm. I picture being in a situation being surrounded by mostly strangers in a bar I have never personally seen. Where will I park? Who else will be there? What am I supposed to do with myself because I really dread conversation with people I don’t know and I just keep thinking these things and they become too real for me and I have to bail out.

I hate bailing out because of social anxiety. It makes me feel like a complete flake. It also makes me feel as if my friends will be disinclined to invite me to whatever get together they have in the future because they figure I just won’t show up. I really haven’t had a chance to explain my thought process to anyone or why I don’t go out in public much anymore. And usually my brain isn’t preoccupied with the absence of other people. I read a lot, I have homework to do, I have music I could write, or I could even take a nap. I’m usually pretty self-sufficient and I always have been.

But then the devil creeps in and reminds me I’m 30 years old. This old lead weight just sort of sits in the bottom of my ventricles and I don’t want to get out of bed. I feel very alone in the fact that my brain works the way it does and that I haven’t had a chance to explain myself to anybody. I’m just here like I’ve always been here. I have some friends who understand, sure. My parents are difficult sometimes, especially my mom because she has experience in dealing with this with my little sister. She started moving things from the spots where I keep them which was actually anxiety-inducing. I couldn’t use my George Foreman grill for a while because she cleaned it and I didn’t want to make it dirty again.

There’s no one I can explain this to and have it make any sort of sense, I feel like. I can try my hardest and the result is what you’re reading but there are not a lot of people who are going to read this because, for me, I don’t feel 100% human all the time. I feel like some forgotten creature that some people bring out for a laugh every now and again and only at their convenience. And the beauty of that thought is it could be right but it could be totally wrong because of mind-blindness, or an inability to see the nonverbal cues that most neuro-typicals use to understand someone’s thinking. I hope I’m wrong.

But that doesn’t change how I feel now.

The Game of [Loss of] Life

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I do not like to play games
Sometimes it’s a distaste for the rules
Or I’m immune to feeling
The wings of levity that comes with
A round table discussion about nothing
But mostly
I don’t like to lose
And I don’t like to give up
Because to give ground to either option
Is to give ground to defeat
And the feat of that I might concede
Is more than I’m willing to allow to proceed
Beyond the guarding gates of my ribcage

But I’ve
Lost so much it feels, so many times
That I have to pretend I’m made of matter
Just to prove I exist when I look to the mirror
So I can feel like I, y’know… matter.

And I will fight until the very last note
Tangled in my vocal cords to avoid it
Like the time I showed up at a friend’s apartment
Red-eyed and tear-cheeked
Trying to imagine that he was still alive

A bottle of this and a broken blister pack of that
Double double toil and  trouble
You should never chase death
With a bottle of No-Doz
Because he calls you in your sleep
So when expelled the contents of his stomach
You could hear the reaper unhook his scythe
From under those ribs
Where it was written, the name of the girl
Who had taken his heart
On his ribs which resonated empty
When his heart kept beating.
Dark room and dim lights painted ghosts
on his high cheekbones in the wake.
Loss of the will to survive
Is to hollow out your chest
And surrender its contents to the sun.
Cursing God for your dilemmas
Son, God grieves with you when you lose at losing, too.

And there’s the piece of me I lost
The I hope I never find again
And that’s the naïveté of thinking
Everything’s gonna be alright again.

You can learn to lose, or
better phrased
Learn what it feels like to lose
So you can sense it in every movement
Of every person you’ve ever
Wrapped your heart string around like a last
Ruffled the secrets woven
In the strands of your hair for
Made copies of keys to your hopes and dreams
But when things start bursting at the seams
You will feel its clarion call
Your balance will become shifted
And you will always let the words
“It’s all my fault” rest heavy across your shoulders
Even if you’ve written fiction
And the ghost you thought had crossed over
Is merely obstructed from view
If only everyone knew
How heavy the cross
Is to lose.

Like when I lost the person
Who taught me the literal meaning of the word
LOVE
She inscribed it upon my sleeve
With my broken heart they day she was gone
And now I can’t erase the three words
She’d force me to say
In her voice
And I can’t lose them. I can never lose them.

And then there are those who are still alive
Who chose to step away into a dusty country sunset
And left me pondering loss
The meaning, the weight, and the taste of it
The iron in the blood, the grit of sand
Wind tumbling lightly against my face
In painted stone valleys that burn red in the sun
I have lost you somewhere and I don’t know
When
or
Why
But I’m trying

And if I gain nothing
I’ll still count it all as loss.

The Chemical Process that Causes Colors to Fade

16alcohol-600
Sometimes…
The presence of a certain person
Will misfilter and cross paths
With my senses and I see
Pigments of my imagination.
They call this synesthesia
And it happens to everyone
From one sense to another.
I guess I’m just blessed
With an unending pallet of colors
My mind uses to paint your presence
In an otherwise
Dull and grey canvas.
I can still place your
abstract brushstrokes behind
My emerald green to sky blue eyes
And they burn as brightly
As neon bar signs.

Not for the first time, probably
But for the first time I can remember
Your colors dulled and detached
Like someone scraped the paint
from the walls we all try to escape
From the confines imposed by life
to wide open spaces
Where freedom is mural of chances you took
And for a moment I couldn’t lay my hands down
to find the crack in this plaster cast memory
Until I saw the colors fade
As you flipped back your head
in an intimate kiss with glass
As you upended a temporary lover’s body
Mouth pressed against his
You spun the bottle ’til it landed on you
And you prayed with lips as saints do
Communion wine without the sacrament
Is just wine
As you took the blood down until
Your colors dulled as time and abuse make them.

Listen.
I am not a teetotaler, a movement in temperance
My words are not that of judgement or prohibition
Listen…
As my heart war drums my sternum
Snare strung with anxiety and sadness
Because this subject is not pen and paper
Because my heart is not dull to the pain that it senses
In anyone.
I wish my anhedonia would come with a side of numb
But it doesn’t and so I worry like I’m human
I sense the prickling of something beneath the haze
And I want to understand it but
Then again
I’m admittedly afraid to ask
But my family’s past is a lead weight underneath my brain
It reminds me it’s there every time I turned my head.

Let me tell you something.
My dad, a railroad man at the time
Made off and out too often with a bottle of whiskey
Drinking straight from the open container
Imbibing alcohol like life-giving water
Only this water went stagnant and poison
As it ate holes straight through his gut
Ulcerated and rotted, his stomach
bled from its protective lining
eaten away by time
As he exsanguinated whole bottles
Into his stomach
Hemorrhaging.
Sometimes, it seems, masking the pain
Is a genesis for more:
An equal reaction.

And then again,
My grandmother was a fan of 7-up
As long as it was coloring a glass
of Canadian Club Whiskey
Chased with pain killers, opioids
Pills she spilled into her hand to kill
Pain she claimed she had from knee replacement
And a metal rod fused to her spine
Sit up straight and the things you swallow
Will go down just fine, won’t they?
Her body took the abuse
like a clay pot buried under
years of past regret
The pressure of a husband who
Barely pretended to give a damn
And so she drank.

I remember one time I drank from a jug
With handle
Because I thought it had water in it
On a hot day in the sun, that was welcome
But when the liquid touched my tongue
I spat it out like words of disgust
I was not old enough then to draw up.
Candy is dandy if you like the taste
You’ll spit out liquor quicker
If you’re not expecting the burn.

Self-medication led to deterioration of her body
She couldn’t tap her body into a wall without
Blood oozing up to the surface of her skin
Dying her skin in patches of black
Hematomas look like leprosy
When you accumulate enough.

Understand.
These are not scared straight stories
Just context of someone who’s worried
And while I realize I may be blowing things
Out of proportion or misconstruing the evidence
I cannot unsee the vibrant evidence
That you are more than what I see
When you absorb that bleach
And you fade like a sunset into the clouds
of the nighttime.

Truth be told,
I’m afraid.
Because I feel like I’m the only one who sees it
And I’m not here for guilt or shame
Just can’t be the one to enable any pain
And I want to ask you just one question
It’s stuck in my mind like a nail
Are you happy?
Because it feels like you aren’t you.
And it’s hard to miss someone
When they’re right there in front of you.

Carrier

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I remembered today I had purchased Sykamore’s album “Petal” after hearing her belt out with great strength the chorus to Transit’s “Never Left”. It’s one of those days when nothing really sounds appealing, like I’ve heard it all before and my expansive and diverse library just can’t cut it. I think it’s safe to say, after some mild depression yesterday, I’m vacillating between that and just plain anhedonia.

But I heard something, as if through the radio. It was spoken with the high and low levels dropped out with some static and noise, so it was hard to make out at first. But I caught enough to use google to find out someone was reciting this, nestled in the instrumentals of the song, “Hope”:

[i carry your heart with me(i carry it in]

BY E. E. CUMMINGS

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

 

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

 

i carry your heart(i carry it in my heart)

 

I don’t know what it was about these words, but they kicked me in the chest. And there was some familiarity to them. Then I remembered this particular scene from what should be considered the greatest medical drama of all time (suck it, Grey’s Anatomy). Then I remembered they were lines uttered by one of the characters I could identify with the most throughout the entire series.

The magic and yet the more difficult things about television shows is the characters are never complete people. They often represent separate parts of the human psyche which makes them easier to put together and tear apart, if necessary. Abby Lockhart (played by Maura Tierney) faced so much hell throughout the series and she still manages to have a sense of humor, albeit a dark one. She stood in front of an armed gunman in Murmurs of the Heart and said, “I knew, I mean, I was positive that happiness was something I was never gonna find… I am just trying to tell you that things can change, they can get better, even if you don’t see it, they can.”

Life left her jaded before her character was fully developed through the seasons. She dealt with alcoholism, divorce, her family’s mental health,  and her own mistakes. And through her story, as long as it spans (about 8 seasons, if I recall), she overcomes. You might find this an odd entry, but if you know me and my love for story and characters, then you understand why. If you don’t, then, to keep it short, I wrap myself up into characters deeply, I analyze and I find parts of myself in them by nature. Some, more than others.

Anyway, the poem and Abby. I remembered this scene after some pondering. Proof that Abby was right. Things do get better. It’s all fiction but it’s a tale of hope nonetheless. Redemption, in a way.