It’s All About the Ovaries (Second Edition of Everyday Aspergers: Part One)

So, I’ve been procrastinating on this post since December 2018.

I’ve analyzed why and have come up short. It’s likely that I don’t care much for self-promotion. Indeed, in the last 6+ years I can count on one hand how many times I’ve asked folks to share about my Everyday Aspergers Facebook page. (And that counts the mention here!) If you haven’t checked it out, please do.

I could blame my procrastination on the countdown to menopause, which I hope and pray arrives tomorrow, as I’ve been dealing with the complexity of endometriosis for years, including the 2018 road traveled of chocolate cysts. Don’t let the name fool you; it’s all about the blood. And now that I’ve over-shared, I will switch gears.

 

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Recently, I’ve had a profound peace — could be hormones shifting and my lady parts semi-retiring — could not. (Oops, focus Sam!) I’d like to think it’s something to do with my faith and spirit. It’s likely a combination of coffee, getting older, and finally getting fed up with not speaking up for myself and finally understanding boundaries! That, and I do feel the presence of an angelic spirit. But that’s another story.

Not much has changed (with my brain) in the past years, since I started writing Everyday Aspergers. Which now has over 1.4 million hits! Well, yes, some of the reason behind the high ‘hit’ number is because there are over 500 posts! Omgosh — write much?

My point being, I still digress to a close-to-annoying degree.

That’s likely why I typically get called to interview for a job, based on my awesome resume, skills, and experience, but don’t seem to ever get the job! (In fact, I don’t even get a rejection letter — just GHOSTED.) Picture me bungee jumping off a high cliff of ‘tell us a bit about yourself,’ and swirling in rapid circles, giggling like I’m twelve, raising my voice in high pitch, fidgeting about, announcing how proud I am to have ASPERGERS, and then correcting myself: “I mean to be on the autism spectrum.”

I leave an interview feeling like I either nailed it and they absolutely LOVED me, and want to be my best friend, or convinced I terrified the living daylights out of them. It’s likely the latter. As I mentioned: I don’t ever hear back. Thank the lord for my job at ultratesting.us, where being neurodivergent is the norm! Thank my lucky stars. (< Madonna video)

Ironically, I have studied 1000s of hours of best hiring practices for my vocation, and can’t seem to keep my Aspie-ness in a bag when under distress at an interview. There must be a pill I can take. (Now picturing Violet in Willy Wonka and the Chocolate Factory, and now must Google to find an image.) “. .  . because Charlie she’s a nitwit.” Not to say I’m a nitwit.

 

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Okay, alas the REAL point of this post is to tell you THE SECOND EDITION OF EVERYDAY ASPERGERS IS HERE! And it’s now available in paperback in many countries. Check out Amazon or ask your local library to see if they can order it. Look at the PRETTY cover by an autistic artist (and my friend and colleague)!

USA amazon

UK amazon

AU amazon

10 Facts You May Not Know About the Book Everyday Aspergers

Are we friends yet? (Facebook link)

 

Okay … done! Although, I don’t think this is what my publisher had in mind.  (scan down for more.)

 

 

On a side note, I will speak to you as if you and I are in a cafe, and I’m catching you up with my medical stories. Sorry for the monologue, and the white-haired man sitting kitty-corner to us that is blushing because I am talking too loud.

This here ^^  … that’s an image of a chocolate cyst. Funny story … after an ultrasound in early 2018, when I found out I had at least one chocolate cyst, (and had gone to the emergency room in excruciating pain, and was curled up on couch most days for weeks) in typical Sammy-fashion, I researched with hyper-focus about the chocolate cysts and implemented some home treatments — including essential oil, strict dietary change, etc.

When I returned months later for a follow-up ultrasound, the technician confirmed indeed the cysts presented (3 of them) exactly like ‘chocolate’ cysts! Immediately following, (literally a few steps down the hall), my OBGYN doc informs me, “The cysts are shrinking, and that doesn’t happen with chocolate cysts, so we can’t call them that anymore. They don’t shrink.”

I was dumbfounded.

Surely, in some cases they can? And I’d done so much, including talking to my body, to ensure healing.

My scrunched up face demonstrated I was confused, as I asked in a high-pitched voice, that no longer suits my age: “Well, what would we call them if they weren’t shrinking?”

She responded, “Oh, definitely chocolate cysts.”

I then got that familiar feeling in my gut that means ‘NO ONE on this planet is truly an expert in anything and most of the time professionals are talking out their donkey.’

(“vulgar slang To say foolish things; to talk of nonsense. Don’t pay Jonathan any mind, Mary, he’s just talking out his ass again.”)

The next time I went back in for a check up, with said Doc, she informs that my chocolate cysts are shrinking or stabilized.

So I guess we are back to calling them that?

Anyhow, it reminds me of the time I had a dead front tooth, when I was in my early 20s, and I went to a dentist that a colleague had suggested I see. It was 1992, a sunny day. The dentist’s recommendation for my dead tooth’s discoloring was to darken all my teeth to match!!! Yes, that’s right. And, noooo, I did not!

I have trouble believing this actually transpired, especially after I told my dental hygienist the story yesterday, and she said that’s the worst telling she has heard to date. Also, because decades have past with my pretty veneer tooth. (The other dentist I saw bleached all my teeth to match the new veneer. Yin and Yang. Dark and Light. Theme of my life.)

(On another side note: I found out this week I have no cavities and an unusually small mouth [which matches my usually small head]. And I warned the dental hygienist not to say she has a small mouth despite what her husband says, because that can be interpreted in different ways.

She was appreciative, and said, “We’re going to get along just fine.”

I always find it to be an interesting phenomenon when I give out unsolicited advice to non-autistics about social graces.)

Needless to say, I never went back to that dentist who wanted to darken my teeth! But the young, inexperienced (terrified) me did shake hysterically in her car afterward. The same way I shook after seeing a ‘specialist’ a few years back.

That time a doctor would diagnose me with ‘a close cousin to POTS syndrome,’ (as my blood pressure acted a bit different from typical POTS, but the tilt table test confirmed the condition.)

This was after 5 ER visits wherein my pulse would go to 160 upon standing, wherein the IV would add sodium to my blood, and remedy the POTS-like reaction, making me seem better; only to be sent home and the symptoms to come back (160 upon standing, weak, shaking, etc.); only for me to return to the ER and be told I must be inventing it for attention.

Yes, hysteria is still widely falsely the diagnosis for women! No wonder I have white-coat syndrome.

Fortunately, my then-husband Bob (now-good friend) was in the patient room with the ‘specialist’ (notice the quotes) and me, when the Doc told me my diagnosis and prescribed an exact treatment plan, e.g, constricting stockings, raise bed, exercise regime, salt intake, etc.

A year later, I came back, feeling super pleased I’d followed the Doc’s directions, and was able to sit up for long periods of time, and return to life as normal (well atypical normal). BUT THEN . . . she SCOLDED me, accusing me of making my condition up, and saying I didn’t have POTS, and didn’t have to do all that. That I wasted my money on salt pills and where did I get the idea I had POTS?

I had to phone my ex-hubby from the car to avoid a nervous breakdown; literally thought I was losing my mind, until I realized the doctor was …

(Scan down for book reviews.)

So . . . I likely should write another post soon that is more about the book. I will. I think. Can’t wait to see what pops out of LV’s mouth then! Sir Brain is shaking his head in shame. (He doesn’t have ovaries.)

539: I Am Too

I am Too
Sensitive
Honest
Emotional
Silly
Sad
Excited
Despondent
Straight Forward
Detailed
I am Too
Affected
Exaggerated
Off Center
Realistic
Hopeful
Critical
Logical
Worried
Frazzled
Careful
I am Too
Serious
Anxious
Self-focused
Self-involved
Introspective
Deep
Frank
Different
Obsessive
I am Too
Open
Transparent
Real
Intense
Forgiving
Helpful
Giving
Understanding
Trusting
I am Too
Confused
Overwhelmed
Naïve
Nervous
Stuck
Controlling
Impatient
Impulsive
Invasive
Needy
Clingy
I am Too
Talkative
Hyper
Sick
Tired
Attached
Aloof
In hiding
I am Too
Quiet
Distant
Inside my head
Contemplative
Analytical
Repetitive
Cyclic
Fearful
Determined
Pattern-seeking
I am Too
Hard on myself
Mean to myself
Unforgiving of myself
Self-punishing
Self-loathing
Pretending
Aching
Hurting
Wishing
Feeling
Isolated
Terrified
Reaching
Wanting
Dying Inside
I am Too

538: Assumption Junction… the truth of my Aspie words

People who don’t know me well, and some who do, sometimes jump to conclusions and assume things about my intention and motivation behind my writing that aren’t necessarily true. I write to write. It’s largely a processing mechanism.

The problem is that who ever is reading my words will interpret said writing based on his or her own opinions and prior knowledge. In other words, if someone is naturally confrontational then the chances of this same person thinking I am being confrontational in my writing is high. Or the opposite might be true, where a confrontational person might make a judgment call that I am weak because I am not displaying a countering personality. Wherein I might be explaining something for a thousand different strands of reasons, all of which pop in and out of my head through the process of scribing, he or she will make an abrupt conclusion about my intentions that includes perhaps two or three primary reasons (again, based on his or her experience). The worst part of it is when this said party then turns and suggests he/she knows what I was trying to say and why I was trying to say it. When truth be told, I have already played over in my busy mind a hundred times why I said what I said, how I said it, and why I said it.

People don’t often know how long I take to write a response. When I am dealing with an out-of-my-comfort-zone response to someone, for example via email or instant messaging to someone who I do not have a close relationship with about a subject I deem important, I take a very long time to write, upwards to an hour for revisions, rewriting, rewording, reworking, and rereading. I stim through the editing process itself to calm my anxiety over the situation. If I am triggered, particularly by what I interpret as an injustice towards another, it takes me even more time to write. What is difficult then is when I am accused by another to have written something in haste, without thought, at length, or without consideration to the audience or the communication rules of some company or organization. It is hard to digest this type of assumption because nothing is further from the truth. The receiver does not understand that I have painstakingly relived scenario after scenario of possible outcomes of how my words might be interpreted. That I have tried my hardest to follow any rules of communication. That I have pushed myself to shorten all I want and feel the need to say. That I have left out more than 75% of what is really on my mind, and sometimes much more than that.

In example of the revision process, I will write a sentence and then imagine the person/audience reading my words. I then evaluate their potential reaction and adjust in hopes of causing the least amount of miscommunication. It’s not about people-pleasing or avoiding conflict, it’s more so conveying my truth as I see it in the most gentle and kind way (and rule-following way) as possible. To do this I switch around words, I alter adjectives, I choose new phrases, and I clarify repeatedly through transposing my words and readjusting. A draft will be rewritten more times than I can count, and large sections deleted, redone, and deleted again. It never seems to be right enough. Not in a perfectionist way, but in a ‘this is my heart’ way.

I discern ahead of time feasible misgivings or upset on the upcoming reader’s part. This process is exhausting at all levels and causes physical and emotional pain. The most troublesome hurt follows if and when the intended recipient responds in one of the many non-constructive ways I had foreseen him/her responding, and then I see all my efforts were for naught.

People think that the length of my writing equates debate, that length = ego, that length = confusion, that length = selfishness, that length = not caring about the recipient, that length = non-professionalism, etc. etc. I don’t write at length to get my point across or to prove something. Once again, I write to clarify my inner workings and to let the person know my intentions fully. If a part of information isn’t shared that I believe at the time is a pertinent piece of the subject at hand I feel as if I am being deceitful, even as I logically know that by definition I am not. No amount of reasoning fixes this.

I over explain myself in written word as much as I do in spoken word. Particularly when emotionally triggered. And such triggers can come from a variety of sources, especially from others’ behaviors that are not privy to the autistic experience. With all my spiritual studies and practices, a part of me would like to say I am ‘above/ being triggered, but that’s hogwash. I am neurologically wired to be more prone to fight-or-flight responses. (And in my case biologically/physically wired that way, as well.) So, I accept that I get triggered.

It is cumbersome and downright dangerous for me to write (without a lot of editing) after I have been triggered. I cannot help but let some of the emotional upset leak through. As much as I try to pamper and sugar coat the words, this ache of being triggered comes out. And then, even with careful revision, the trigger leaks through. In response, I am evaluated based on the characteristics of my writing. I am labeled emotional, reactive, too concerned, too sensitive, etc. This adds to the initial trigger, and to the continual compounded feelings of being misunderstood and misinterpreted throughout my life. Thus is the prospect of such an invisible disability when held by a person that primarily seems to function at a high-level of ‘normalcy.’

People with autism usually get me. And I in turn get them. I am the first to smile when someone sends me a very long online message. Usually the person is apologizing ahead of time for what they label a ‘rambling.’ And usually I am skimming some of it and finding the golden nuggets of what was written. I get it. I am the same way. I am going on and on about a particular subject whilst at the same time stepping back and observing myself and thinking: Why am I doing this? Sorry! Still, I do it. I process and I stim through words.

I can go through periods of purposeful semi-muteness, wherein I try not to talk at length to anyone. I am mad at myself and the world at that point. And don’t think I can function unless I change who I am, at least outwardly. Usually this state by nature turns me into some type of hermit, where I am only talking to maybe one person I know. It’s the way I retreat and I guess hide from the world. When I have had enough of me and I believe the world has had enough of me, I burrow like a wounded animal licking my wounds and punishing myself for having any form of self-pity and the brain I do. Not long after I come out of it and I am a babbling brook once again.

People who are wired like me understand. They know the ebb and flow of being this self. They know that even we get tired of the non-stop jabber and thoughts and processing. And they, for the most part, accept me unconditionally, with so-called flaws and all. It’s the others that just don’t get it whom I have a difficult time repeatedly associating with.

It’s like this, supposing I am blind. I use a different form of communication. It’s not typical. It’s not traditional. And it’s accepted. After all you can readily observe I am blind.

And then it’s like this: I have autism. I use a different form of communication. It’s not typical. It’s not traditional. And it’s not accepted. After all you can’t readily observe my disability and I should be able to change. I can adjust. I can conform. I can just communicate like you do. Follow the rules and protocol. And if I cannot, then I must be inconsiderate, impossible to train, or stubborn.

But it’s not that way. It’s just not. I cannot adapt without modifications and understanding, anymore than the person with a visible disability can. If I was an amputee, I wouldn’t be able to grow legs. If I was deaf, my speech would be affected. If I have autism, my brain is different. It doesn’t just change based on suggestion. It’s an impossibility.

Sam’s book Everyday Aspergers is now available internationally on Amazon.

More information can be found at her company: myspectrumsuite.com

512: The Whipping Girl

I am guilty of gluttony, and I don’t mean that double-scoop mint ice cream on a sugar cone, followed by cheesecake and chocolate bits.

Gluttony has changed meanings from its original origins. At its roots, gluttony was referred to as self-punishing, self-pity, and self-affliction associated with the act of harming oneself in hopes of making amends to a higher power, most prominently represented as the remorseful priest whipping his back in a brutal attempt to make amends to God. It was viewed as a sin because even as the action is perceived as a sacrifice and admission of wrongs to God, it is in actuality the highest from of ego-based self-focus. It sets one’s agony above everything else, and the person becomes the focus not God.

As an Aspie, I am gluttonous as I whip myself mentally, damaging my self-esteem whilst under the guise of ‘wanting to be better.’

I think many Aspies are glutton for punishment, not because we desire to be but because our brains are instinctually wired to over-analyze, pick apart, and find inherent flaws. Typically, and ideally, we would be suited best for work as engineers or solvers of planetary problems; yet, most of us don’t have something to occupy our minds continually that is directly related to problem solving for a company or the whole of the world. In actuality, most of us experience several hours of the day, if not more, in isolation, trapped in our thoughts revolving around problem solving that doesn’t do anyone any good.

My thinking is: when we don’t have a BIGGER solution to solve, we set about to solve ourselves or someone else.

My trouble starts when I focus on someone else and what he has said or done or when I focus on myself and what I have said or done, or a combination of the aforementioned (aka Double-Whammy).

Because my mind is a vast endless landscape—think bland canvas upon blank canvas in repetitive mirrors beckoning to be painted—I can create havoc if I focus on an individual, especially if that someone is out of sight. In my case, out of sight does not mean out of mind. In my case, out of sight means trapped inside the hamster wheel of my mind: looping.

My gluttony, (self-affliction/whipping the mind), happens when I set about to focus on someone else but I can’t find answers about someone else, I can’t find a solution, and/or I can’t reach an endpoint. Given the obvious fact that people are not stagnant beings, and are creatures constantly changing in emotions, outlook, opinions, and behaviors, (not to mention biologically, aka cells shedding, blood pumping, microorganisms, etc.), the quest to reach an end conclusion with any particular person is a ridiculous rendering to begin with. Even if an accurate, or semi-close-to-accurate conclusion about someone or self is reached by said Aspie, the answer will not stick. It’s an impossibility to know an outcome of anyone because we change. Unless the person happens to drop dead right at the moment of discovery and all conclusions are said and done. Morbid, but true, and the only likely scenario in which my over-thinking and resulting theorizing might feasibly match a singular moment in someone’s life. People aren’t objects. They aren’t things. They aren’t puzzles to be solved, but somehow my brain thinks they are.

I feel like a tracking device set down on earth that narrows in on some subject and then dissects and gathers information, and then takes the data and internalizes it and digests it and then attempts to reach conclusions, without noting that the subject at hand is both impossible to understand in completion and that I am not a robot or machine. I forget that. I truly forget that I can’t reach a conclusion with people which will lead to a predictable outcome. I mean, like rolling dice, there is always that chance that my choice will match what’s in front of me; but even then, eventually the dice will be rolled again. I can’t seem to get this fact to compute though: that no amount of thinking, and re-thinking, and re-working will relieve my crushing anxiety and solve the problem.

And that’s at the core of it all: Anxiety.

And I don’t know what comes first—the anxiety (generalized anxiety disorder) or the perceived problem. I know that my body is predisposition to respond to stress in a fight or flight manner (as a result of Post Traumatic Stress, and as a result of the way I am genetically structured with a joint mobility syndrome that affects my autonomic functioning). So at times it is the anxiety that comes first, like trigger-chemicals that put my body on high-alert, and then from there I search for the actual problem. I get scared first, and then I try to figure out why. It’s a fact-seeking mission. Danger! Danger! Will Robinson. I am the robot on high alert; I am Will; and I am Danger. That’s the way it goes.

From there, whether it is an actual trigger that comes first—aka something someone said or did, a thought, a symbol, image, etc.—or my body’s biochemical makeup (fight or flight), I dive bomb into an oblivious state of confusion. I become a master puzzle solver, a master puppeteer of self, too, as I set about to dig myself out of where I have been buried. On alert, I feel walloped, cornered, and frightened, and I set out to search for answers, with my little stick with the bundle at the end, a hobo with her knapsack thinking the travel will bring me to some destination that spells RELIEF. But the truth is, I ought not set out. I shouldn’t. I should just set up camp and stay where I am. I shouldn’t just tramp or jump train. But I do. I do. I do.

I become lost then, on an endless destination, wanting to forge through the muck of data—some thick ivy-laden forest—to reach the other side in order to feel relief. I want nothing else but to end the anxiety. And my mind thinks if I think enough I will end the anxiety. It thinks: I got this. It says: Let me take over. It shouts: Just rethink it one more time! And I go round in this circle, nonstop, grabbing onto any semblance of information, any speck of hope for absolution. I just want to stop the pain inside of me, this nervous panicky feeling that resembles being abandoned, kicked out of my only home, and left naked on the floor of a monster’s adobe, all at once. I want to run and run through my mind’s files to find the answer, to bring anecdote, relief. Only I can’t. I can’t!

And still I find myself doing this—tramping, train, forest, file-finding—whatever. Just moving and moving and forging and forging. I get so tangled up in thought that the immobility sets in, and from there any tiny task seems impossible. Forget doing the dishes or leaving the house, the prospect of bending over and retrieving a piece of rubbish from the carpet seems as difficult as climbing Mt. Everest. I can’t bend. I can’t move. I can’t function. I shutdown, literally, like a computer on overload, overheated, and with her memory overstocked.

That’s it. I am done for. And from there I start to wonder what is wrong with me. I begin to brutally beat myself up. The whipping begins. It’s not so much: WHY can’t I solve this. It’s more so: WHY am I trying to solve this? WHY can’t I shut off my mind. WHAT is wrong with me. I AM flawed. I AM wrong. I NEED help. And there is NO ONE that can help me. The whipping continues on from there. I am good for nothing. How can I go on like this? How do I turn off my brain? And then the really redundant thoughts set in, that most humans suffer through, the ones based on childhood trauma and drama, all the negative messages we collective like to lick at like old wounds that won’t heal. I become that dog—lick lick lick—needing a cone over and about my head so something can save me from hurting me. But there’s no cone. Just me and my brain, my glorious brain.

Everything eventually leads to gluttony. Unless something stops me midstream, like an unexpected event or calling, something that catches my eye or heart, then I am okay, leaped out of the cyclic pain by a momentary distraction. The only thing is that my monster mind is still lurking in the background, that part of me that likes to munch at data and delete any sign of sanity.

I have yet to find a way to make any of this stop. Sure, I am getting closer as I delve into deeper and deeper analysis, bringing along a fleet of fellow Aspies with me that nod their heads and delirious gorgeous hearts in recognition. But it seems the deeper I dig the more grand the journey becomes—like opening up a jar and finding a universe inside. I just can’t seem to get to the end of me. And then I remember it’s my mind again, taking what it perceives as solvable and spinning the endless webs into oblivion.

500: Unspun Love

Unspun Love

I am letting go of what was, of what I held on as truth, reality, this sense of REAL
There are webs upon webs inside of me, touching down in random places
With a stickiness of messiness, a buttercup of blood, daunting, unchanging, unforgiving
Had I been hurt, I could say so, but who is to say what causes the pain, whose action, whose way, whose plan
I can’t say that this is this because of this, as there is no definite answer, no exact knowing
No causation I can single out and assuredly point finger in proclamation
I do know there is pain; I know this well, and perhaps I know too, I blamed myself all of these years
Easier to blame self than another, I suppose, to take in what is poison than to spill out, making new suffering
There were numerous ways in which I taught myself falsehoods, temporary strings I weaved in hopes of categorizing my world
Into boxes I placed behaviors and actions, wishes and dreams, and watched the withering of my own undoing
I’d hoped that much would change without effort, in that I’d tried hard to keep trying, to keep going, to move
And prayers seemed increasingly unanswered or at minimum unheard
Mine was a dangerous labyrinth, the way in which my youthful days played out
Keeping time by the stars at night and the ringlets of towering trees, I danced
Always happy, I seemed, always light-filled and bright, Mother told it so
As did strangers and random passerbys; had I known to beware
One after one things left, disappeared, vanished, and were taken, gone before sunrise was woken
One after one I became teacher to the deepest soul-self, the tiny innocent creature named: me
And the lessons I gave were enough for the moment, as broken and rotten as they be
The world was a place of trickery and thievery; I’d remembered those men in Mama’s room
The town was a place of random violence, untruths, disbelief, and fizzled-out faith; I’d watched from my high-tower of soul
And everywhere, all about, the sense, I called ‘abandonment,’ erased a part of me
Built upon my cherished treasure, my beacon, my light, a bombardment stretched and pulled like dough into a gooey mess—rancid, undone falsehoods
I witnessed death; I witnessed children who vanished, family that dissolved, men and woman who made promises and then took sword to my delicate heart and severed
I didn’t understand laughter then, the type aimed at me; nor the glances of demise; nor the mannerisms masqueraded across the halls of scattered scholarly prisons
I didn’t understand what was outside, what seeped out of some and bleed into others
I knew enough to know that people weren’t to be trusted, that people caused harm, that people took what was pure and demolished it in the name of selfish ways
And yet, I knew, too, that I could not stop trusting and hoping, that I would forever be this someone locked in a cell of naïve-padded walls, unable to see beyond the rose-charm-pink that tinted my outlook
How I longed to be like the rest and learn, to take inventory, to observe happenings and conclude future meanderings through the mucky patch—my life
And still I wept in a prism of dichotomy, a blossomed keen awareness, lacking capacity to alter anything
Helpless was an understatement, a definition of warrior child turned fragile flower
For in the absence of assistance within, there would be no means in which to reclaim a foundation
Instead, I rather drifted in an open sea-sky of oblivion, blue into blue, not understanding the methods of instigators, nor where to house my love