I remember being little and how much it hurt

I remembered for the first time today, what it felt like to be little, nothing more than a pre-toddler, and endure having my mother wash my face after a meal. It felt like she was maliciously rubbing my face with sandpaper.

Everything, every small, ordinary and necessary thing from hair washing, teeth brushing, washing up after meals, clothes on and clothes off...those things hurt me. I cried and screamed a lot because the people, when they touched me, hurt me. They didn't know I was Autistic. They just thought I was obstinate, defiant, too sensitive or simply disagreeable. Autism wasn't in my family's vocabulary even though many had it.

My mother would put me in my room and shut the door. I was her most difficult child she will swear by it to this day.

I wasn't difficult. 

I was Autistic.

People were hurting me. Each day, every day I hurt from ordinary things. 

No one understood why Amy was so broke and unhappy. 

I remembered the feel of my mother simply, lightly, washing my face after breakfast. I cried. I cried then. I cry now. I was getting hurt all the time. I remember now.

Mother's White Gloves

When I was a very young child, it was the 1960s and my mother wore white gloves whenever she would leave the house.

She had many different pairs. Some had raised fabric like stripes on the top, three or four lines. Some of them had buttons. All of them were similarly silky and soft.

My favorite gloves were the ones that had a small button in the center, underneath the wrist. I loved two different button kinds. One type had a smooth, shiny, mother of pearl luminescence and the other, even more favorite, were the gloves with the small, white, fabric covered button, almost crocheted looking.

I loved to touch the gloves, especially the button ones. Mom could only tolerate so much. Some days she couldn't tolerate me touching and playing with the button at all.

Read faces. I learned to look at her face to see if she was happy or mad. I learned which faces she made and when it could touch and not touch.

I loved mom's white gloves.

My First Trip to the Store after Shutdown

When I'm in Shutdown and can barely move yet I can still think clearly, I set a goal, something to look forward to whenever I feel well enough to walk again. This Shutdown I really wanted to go to Home Depot and look at their cactus.

Today, I was able to get there!! I still had to use my handicapped placard but I didn't require an electric cart. I am definitely on the mend. 

I never know what tomorrow brings. Will the extreme exhaustion return due to my energy expenditure tonight? Or will I feel strong enough to get to the grocery store and replenish my food supply.

I had a brief moment in the sun. It felt good.

Aspergers and Alone

Autistic Burnout Shutdown explained

Autistic Shutdown Burnout the Misery of being Autistic

I've grown so tired of having malady after malady that is either rare or misunderstood or difficulty to believe. Add to the mix Autistic Shutdown/Burnout or ASB for short.

My ASB presents itself first as my legs feel heavy, my body is sluggish and I start sleeping 12-18 hours each day. It progresses to the point that I have to force myself, talk myself into, getting up to get a glass of water, a sandwich or to go to the bathroom 

My breathing slows like when I'm falling asleep. My mind stops being able to focus. Then I fall into heavy sleep for hours. I stop getting hungry or thirsty. I can no longer take my dog for a short walk or walk the distance to get into my car.

It's difficult to explain. Difficult to believe. And a nightmare of helplessness to live.

There is no help available. No medication. No cure. Most people have never heard of it. So many disbelieve and attribute it to laziness or depression or malingering. It is no such thing.

ASB is the body's reaction to overstimulation, daily hyperstimulation and overproduction of stress hormones to combat daily life.

ASB turns Autism into a physical manifestion, a bodily illness that can be seen, felt and not at all understood.

One of the first times I experienced ASB was after my first ten day vacation through the Midwest. I returned home, face planted on my couch, lost the ability to speak and move, and fell into deep, numbing slumber. I lost control of my ability to function, even marginally, for a couple of weeks.

I lost friends when I could not speak to explain this physical mystery. I ended up in the hospital because my extreme symptoms caused alarm. I underwent every medical test available to rule out all the serious illnesses but no one had an answer.

I'm sure they all assumed it was "just in my head", a mental disorder I had manifested. There were no answers then, and for years. No one could tell me why my body and mind would shutdown for days and weeks.

I'm not sure how I stumbled upon the term Autistic Burnout but finally something fit together. Something made sense in the sparse writings of ASB. 

It doesn't make it any easier to live with. It doesn't make sense to most people. I try and explaining this logical construct of how the Autistic brain gets overwhelmed but I think few understand it and fewer believe me.

I'm a factory of disbelief and impossibilities. 

It feels truly helpless and awful. I become useless to the world and to myself. I cannot ask for help without lengthy explanation and if I'm shutdown each word, every small action is a heavy expenditure.

It's so miserable beyond comprehension. It can strike without warning. It is why I limit my activities, appointments, outings, even trips to the grocery store.

It's why I always have on hand two weeks of frozen meals. Why I have two weeks of dog food. And why I try and keep my laundry and dishes done. Because when shutdown hits, it is like pulling a lever that says All Stop. Every Thing Stops. Little mundane daily actions become mountains. Feeding the dog means I'll be passed out on the couch for two hours. A quick microwaved meal means I'm done for the afternoon. Bedtime ends up at 5 or 6 pm.

There is no help for me. No way to stop this bodily madness. No way to fight inertia. No way to slow the outer world down enough so I struggle less.

Autistic Shutdowns are real. They happen and they sieze and stop my life for days, weeks and months.

I don't know when this or any Shutdown will end.

Limbo.

Life on hold.

Autism 

Cloud Atlas, Letters from Zedelghem, words & quotes

macadam- broken stone of even size used in successively compacted layers for surfacing roads and paths

penury- extreme poverty; destitution

coffinesque- resembling a coffin

pong- a strong, unpleasant smell

cadged- ask for or obtain (something to which one is not strictly entitled)

gnossiennesque-

carapaces- something regarded as a protective or defensive covering 

"Girls fascinate in different ways."

cor anglais- a musical instrument also called an English horn

"Implausible truth can serve one better than plausible fiction, and now was such a time."

decoking- remove something concrete, as by lifting, pushing or taking off

frieze- a broad horizontal band of sculpted or painted decoration, especially on a wall near the ceiling

amanuensis- a literary or artistic assistant, in particular one who takes dictation or copies manuscripts

retroussé nose- nose turned up at the tip in an attractive way

louche- disreputable or sordid in a radish or appealing way

frisson- a sudden strong feeling of excitement or fear; a thrill

carillon- a set of bells in a tower, played using a keyboard or by an automatic mechanism similar to a piano roll

mordant- having or showing a sharp or critical quality (especially of humor); biting

six-birch-

bête noire- a person or thing that one particularly dislikes

arpeggios- the notes of a chord played in succession, either ascending or descending

execrable- extremely bad or unpleasant

brace- a pair of game birds

sundered- split apart

" Now and then goldfish splish and gleam like new pennies dropped in water."

demoiselle- a small graceful Old World crane with a black head and breast and white ear tufts; or a type of damselfly

"If people praise you, you're not walking your own path."

memsahibs- a married white or upper-class woman (often used as a respectful form of address by non white people)

deigned- condescending to give (something)

garble- reproduce in a confused and distorted way

apposite- apt in the circumstances or in relation to something 

scuppered- sink deliberately; prevent from working or succeeding; thwart

erstwhile- former

 

abject- (of something bad) experienced or present to the maximum degree; completely without pride or dignity

in a trice- quickly

irascible- having or showing a tendency to be easily angered

cossets- care for and protect in an overindulgence way

evinced- reveal the presence of (a quality or feeling); be evidence of; indicate

dodecaphonists- relating to, composing in or consisting of twelve-tone music

escutcheons- shield or emblems bearing coats of arms; a flat piece of metal for protection and often ornamentation, around a keyhole, door handle or light switch

crenellations- the battlements of a castle or other building

runneling- trickling

comfortable little warren- a densely populated or labyrinthine building or district

enmity- the state or feeling of being actively opposed or hostile to someone or something

lucre- money, especially when regarded as sordid or distasteful or gained in a dishonorable way

flutterbying- a butterfly

flautism- 

staves- vertical wood posts or planks

sangfroid- composure or coolness, sometimes excessive, as shown in danger or under trying circumstances 

mewled- whimper, cry softly

escritoire- a small writing desk with drawers and compartments 

juvenilia- works produced by an author or artist while still young

riposted- to make a quick, clever reply to an insult or criticism 

stickleback- small fish with sharp spines

eschew- deliberately avoid using

cuckolder- the husband of an adulterous wife

sherbety- 

pastiches- artist works in a style that imitates that of another work, artist, or period

fatuous- silly and pointless

trunculent- eager or quick to argue or fight; aggressively defiant

glabrous- smooth, free from hair

burghers- a wealthy citizen

beetly-

pince-nez - a pair of eyeglasses with a nose clip instead of earpieces

sweet bird of solvency- ability to pay one's debt

sinecured- a position requiring little or no work but giving the holder status or financial benefit 

shagreen- a kind of unmanned leather with a rough granulated surface

beatific- blissfully happy

Bach motet- a short piece of sacred choral music

élan- energy, style, and enthusiasm 

scarered- 

dandified- showing excessive concern about one's clothes or appearance

jackdaw- small gray-headed crow

flummoxed- bewildered 

(ducked into a) mew- a place for hiding

chroma- purity or intensity of color

Fun Words and Quotes from Cloud Atlas by David Mitchell

I started reading Cloud Atlas tonight. As I looked up the new and unfamiliar words like Sheog, I found a blog that featured words from the first ten pages. Then it stopped. Thus I write and record to look up and clarify the words of Cloud Atlas.

pusillanimity- lack of courage or determination; timidity

guerno- ???

penurious- extremely poor; poverty-stricken 

bilged- to break a hole in the bilge of; the lowest point of a ship's inner hull

ordure- something regarded as vile or abhorrent

vassals- a person in a subordinate position to another

Chatham Island- the largest island of the Chatham Islands group, in the south Pacific Ocean off the eastern coast of New Zealand's South Island

fecundated- fertilize; make fruitful

"Peace, though beloved of our Lord, is a cardinal virtue only if your neighbors share your conscience."

extirpation- local extinction 

"The merciful plowing shoots a trusty horse grown too old for service."

ameliorate- make (something bad or unsatisfactory) better

aborgate- repeal or do away with; evade

renege- go back on a promise, undertaking, or contract

"As many truths as men."

simulacrums- an image or representation of someone or something

bestirs- makes a physical or mental effort

salt-horse - salted beef

despotism- the exercise of absolute power, especially in a cruel and oppressive way

victualing- providing with food

Aesculapian- relating to medicine or physicians

befell- to happen or occur

circumambulating- walk all the way around

mollyhawk- a medium-sized albatross 

diaphanous fog- light, delicate, translucent 

nebulous quilts- in the form of a cloud or haze; hazy

summery pillows- characteristic of or suitable for summer

bosky- wooded, covered by trees or bushes

hawser- a thick rope or cable for mooring a ship

ketch- a two-masted sailboat

fo'c'sle- the forward part of a ship below the deck, traditionally used as the crew's living quarters

thitherwards- toward that place

tempest- a violent storm; tumult, uproar

usurous- practicing usury (the illegal action of lending money at unreasonably high rates of interest

jackwood- a rainforest tree of Eastern Australia whose bark is dark brown or reddish-brown and often scaly

bowsprit- a spar extending forward from a ship's bow, to which the forestays are fastened

pique- interest or curiosity

lamentable- deplorable bad or unsatisfactory 

commodious- roomy and comfortable 

Friday is a Jonah amongst sailors; Jonah meaning bad luck

fripperies- showy or unnecessary ornaments

appurtenances- an accessory or other item associated with a particular activity or style of living

spectra of powders- spectrums or bands of colors, as seen in a rainbow 

unguents- soft greasy or viscous substances used as ointments or for lubrication

furtive- attempting to avoid notice or attention, typically because of guilt or a belief that discovery would lead to troubles; secretive

gratis- without charge; free

trice- in a moment; very quickly

desiderata- something that is needed or wanted

pillory- a wooden framework with holes for the head and hands, in which an offender was imprisoned

affright- frightened 

gaoler- someone who guards prisoners

certitude- absolute certainty or conviction that something is the case

cacophony- a harsh discordant mixture of sounds

alarum- alarm

arrack- an alcoholic liquor typically distilled from the sap of the coconut palm or from rice

dolorous- feeling or expressing great sorrow or distress

"Pain is strong, aye- but friends' eyes, more strong."

pidgin- denoting a simplified form of a language

vicissitudes- a change of circumstances or fortune, typically one that is unwelcome or unpleasant 

scrofula- a disease with swollen glands, probably a form of tuberculosis 

subjugation- the action of bringing someone or something under domination or control

condign- (of punishment or retribution) appropriate to the crime or wrongdoing; fitting and deserved 

storiated- decorated with historical, legendary, or emblematic designs

putative- generally considered or reputed to be

bestir- make a physical or mental effort; exert or rouse oneself

arras- a rich tapestry, typically hung on the walls of a room or used to conceal an alcove

"To fool a judge, feign fascination, but to bamboozle the whole court, feign boredom."

percipience- good understanding of things; perceptiveness

lunatick- lunatic, one who is foolish, dangerous, crazy

odiously- in an offensive and hateful manner

admixture- a mixture

laphrydictic ???

valetudinarian- a person who is unduly anxious about their health

"My doctor is an uncut diamond of thr first water."

Lethean- causing oblivion or forgetfulness of the past

"Homer lulls me"

phosphorescence- light emitted by a substance without combustion or perceptible heat

sinnet- braided cordage in flat, round, or square form

supernuminaires- exceeding the usual, stated, or prescribed number

satyr- a male nature spirit with ears and a tail resembling a horse

erudite- having or showing great knowledge 

mal de mar- another phrase meaning seasickness

bon gré mal gré-.good grace, bad grace; like it or not; willingly or not

harum-scarum - reckless; impetuoud

Delphic- ambiguous

astraddle- with the legs stretched widely on each side of

End page 39

When you can see who you are, it isn't always pretty

Self-Awareness

Letting Go

When do you let go of the things you once were?

I still think of myself as a nurses aide, yet I haven't been in that profession for thirty years.

The War of the Worlds by H.G. Wells, a Book Review, not the movie

I just finished reading The War of the Worlds. It was a real page-turner, a surprise at every chapter, as the book has few similarities to the movies that I have watched of the same title.

I expected to see a worded version of the 1953 movie with Dr. Clayton Forrester, a single man who thwarts the Martians, meets a girl and finds God. Boy, that movie bore a scant resemblance to the book. 

I'll give the film credit in that it portrayed the Martians in a semi-accurate way. It captured the terror, the thrill, the imminent danger that Wells described with great clarity. The book surprised me in how it kept me on the edge of my seat, pulse racing, more than I care to admit.

Over halfway through the book, it dawned on me that maybe only small portions of the book was used as the latter half was bogged down and downright boring in parts. All events take place around London, where Wells took great pains to describe each and every town and city, much to my lackadaisical bent.

I recently watched the first season of the 2019 TV series, War of the Worlds. While the episodes were well-written, somewhat plausible and entertaining, I found nothing but a few, small morsels that resembled the original book. Granted, there are going to be large discrepancies due to the passage of time. A book written in 1897 can hardly be transformed to 1953 or 2019 without major elements radically change shape.

I tried watching the 2005 movie version with C. Thomas Howell but that only lasted for less than thirty minutes. The opening nudity followed by the woman's proclamation that the alien ship "smelled like a**" prompted me to put an early end to that low-end, highly deviating from the book, film. Nope. I do not recommend that one.

I have been trying to locate a free version of the Tom Cruise, Dakota Fanning film. Judging from the trailer, it is my best hope of finding a movie that accurately portrays the spirit of the book.

Regarding the book, the ending is plausible and the final paragraph, my favorite.

If you've read the book, let me know what you think. 

Autistic All-Star

I'm feeling strongly Autistic these days and quite happy about it. I have a though strict, extremely tasty and healthy meal choice going where by, each day I eat 95% of the exact same thing!! Less variety means less choices equals less stress and dismay. 

I have a solid, daily "uniform" that suits me fabulously. I wear an oversized Oxford shirt, jeans and my shoes, often without socks these days, do I'm kind of branching out in the world. 

I have a handful of fun projects that I pick and choose from that entertain me. Currently reading a book and crafting with felt.

I am feeling physically well, thus a walk or two each day for 2-3 miles.

Methinks that my sudden increase in energy may be due to my two new supplements: NAC and folinic acid. Both have been heavily tested and researched and shown promise in reducing Autistic symptoms.

I'll have to write a post specific to those two as I believe I have stumbled upon a way to curb my Shutdowns and Burnout.

Just feeling Autistic and feeling good about myself. Weird, huh?!

Losing a Friend

When you have 20 friends and lose one is different than having 3 friends and losing one.

I've never understood the art of friendship, thus I have only one or two left in my arsenal, my back pocket. I'm lying. That's wishful thinking. I have no one that I can talk to who understands AspieSpeak, aka, the odd way in which I speak due to the unique way I view the world, heavily slanted with Complex PTSD for good measure, you know, adding in more uncertainty and irrational fears and proclivities. But I used to have Bob.

Bob, who I actually met via this blog, was the male, taller, slightly more social version of me. He had a blog and I stumbled upon it. He wrote of the raw, true emotions of being neglected and sexually abused. His words were words I had never thought I'd see in print, aloud. His writing gave me strength and courage to finally speak about my own incestuous, prostituted, neglected and tortured (yeah, like the real torture stuff, not just a word for dramatic effect) past family experiences. 

He was like me in that he had not a soul in the world that truly loved, cared and knew him. He had the pretend, totally loveless, slightly abusive main relationship person, as did I at the time. We found each other online, through our blogs and our words intermingled and danced, so happy to have finally found a mate, a friend, a kindred spirit in a world on fire and chaos.

Sometimes, we speak every day. Other times not for weeks at a time. We were always connected regardless of whether we wrote each other of not.

We both understood the pain of having parents and family forego, neglect and dismiss us. We were non-beings, small things to be ignored, beaten, abused, sexually assaulted. That was all we were growing up. That was the stuff stuffed in us that we carried and rummaged through each and every day. No one had our back. Not ever. But Bob and I had each other. And all was right in the world for almost a decade.

We both understood the extreme loneliness. We spoke often of the pain of touch deprivation. He called it "touch starved" and I concurred. It is a starvation that you cannot fix yourself. It's craving the nonchalant touch of the store clerk as she hands you your change or multiple trips to doctors and er's because your body is in pain and those brief touches with hands, and the listening would slightly ease the hurt, fill the hollow ever so briefly.

To be alone in the world without the strength to reach out, without being able to find the words to let others know you need help, unable to get the comfort you need, the futility, the pain, sucked into darkness. Bob and I, together sometimes found words. Mostly we were just comfort to each other. At least one person knew my pain. At least one person knew me and cared about me. That's what Bob Forbes and I were to each other, Bestest Friends, each other's Only.

Then last Thanksgiving I wrote him. And I never, ever heard back. A social media scan revealed an accident report. Bob was killed instantly in a car accident. Still tough to believe my friend is gone. And I am alone in the world.

It's tough. It's been some months but it's really still painful. I talk with him some days more than others. I'm glad he is no longer in pain. 

I loved my friend Bob. I miss him terribly. I'm reassured that, at my middle age, I could drop dead of completely natural causes and I'm okay with that.

I go on. Walking alone. Hoping, maybe, someday to find a friend.

Love you Bob

I don't have goals, rather Daily Quests

 I have always shied away from speculation and future fortune telling; I dislike the aspect of goals. I can foretell tomorrow's mood as one can guess at the impending weather. I like absolutes even though few exist.

I'm reminded of the proverbial Carrot-on-a-Stick, I need to create a "carrot" so that I drag my sorry ass out of bed and have something to look forward to so that I don't languish in the Nether, Purgatory or Limbo. I'm a sailboat on the ocean and require wind so that I might raise my sail.

I have small, doable quests that I set for my self. It used to be something as simple as coffee and peanut butter toast for breakfast. It was something to look forward to. It was a direction, a reason to breathe, a handhold, my next step.

Today, my quest was a simple green Oxford shirt, large or extra large, solid color, without defect and with its signature buttoned collar point intact. I had 4 or 5 thrift stores to choose from. My Life had purpose and meaning, which may seem silly to some but I am a person without family or friends, thus these small quests are of major importance. 

If I fell down and didn't get back up, no one would notice or look for me. My existence is tenuous at best so I require reason, objectives to get up in the morning, bravely leave my secure home and mingle with the oft unpleasant and loud muggles known as neurotypicals.

Last week, I ventured out in search of books on pysanky, otherwise known as the obscure art of Ukranian Egg Decorating. Pysanky aficionados are pretty rare and the few books on the subject, even rarer, but it propelled me on an adventure from bookstore to bookstore and from thrift shop to thrift shop. My quest, in a sense, failed in that I did not add a new book to my somber collection, yet I accomplished getting through a nother series of days focused and with a sense of minor anticipation. 

Some people say their prayers before falling asleep at night. Me, I search for and name my next day's quest.

I did find the green Oxford I desired which surprised and greatly pleased me. The second thrift store had exactly what I desired. Life can be good especially if done in small, manageable steps.

White Whale Dream

I dreamt I lived on a small lake. Looking out, I thought I saw something large and white in the water near the dock. I went out and looked. Sure enough, a very large white whale was swimming about. He turned and looked at me in a friendly way. I loved seeing him.

Then, still on the dock, a row boat full of refugees, most notably an old sea captain holding a small child. He handed the child to me. I invited them in as I was supposed to, to care for them that had been lost, adrift, alone.

I think one of my biggest lessons is learning to trust myself