atypical: life with asperger’s in 20 + one third chapters

Friday 29 June 2012

the title of a book by jesse a. saperstein, published by perigee. in many ways this is the best Asperger’s book I’ve read thus far.

But before the praise, I have to say that I have a big bone to pick with Jesse. Over and over in his book, he implores the neurotypical world to take the radical step of giving us Aspies a chance. And yet… I’ve sent at least three messages to him on facebook, and he hasn’t answered a single one. Can’t he give me a chance? It’s true that I may not be sending the messages correctly. I have a terrible time navigating 0n facebook. So maybe he’s not ignoring me. But if you are, Jesse, why?

Jesse has many of the obvious, and to many people obnoxious, Asperger’s tics that I myself do not have, and which have made social interactions even more arduous for him than they are for me… and that’s already bad enough. And yet he has also had the good f0rtune, like Grandin and Robison and the others, to have his writing published. No such good fortune has shown up for me or for many other Aspies who are writing. Jesse also has been extremely lucky in his parents, which many of us are not, and he knows this very well. He mentions it many times.

I like this book so much because it talks about rage, and about repeated failures, and about how these things make one feel. He discusses the desperation we Aspies have to be given a chance. He is funny, but also honest. He is positive, but also bitter. He discusses the whole range of emotions that Asperger’s and its consequences have engendered in him. He does not gild the lily. Or at least not very much.

Once again, there are so many great lines I could pull out this book that I’d be hauled to the rack for gross plagiarism. Just read it.

Most of my life has entailed “pushing against a force,” with perpetually frustrating outcomes.

The journey has forced me into quagmires of chronic failure and bitterness that have lasted up to years at a time.

When you have met one person with autism… you have met one person with autism.

Rejection is still unbearable as an adult, and I have never stopped asking the same questions. “What did I do?”

When people fail to understand why someone is different, they will often deny him or her the “radical” courtesy of  a chance.

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read…   Neverending solitaire

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

asperger syndrome — a love story

wednesday 27 june 2010

this is the title of a really good book by sarah hendrickx and keith newton (british couple, book published by jessica kingsley publishers)

Though I was not involved in a romantic relationship when I bought and read this book, I found it more helpful in understanding differences between autistics and NT’s than any book I’ve read to date. There are many, many excellent, informative quotes that I’ve highlighted in my copy, but if I gave them to you here I might get accused of stealing half the book. I strongly recommend that interested people actually read this book.

I was continually struck — and pleased — by Sarah’s willingness to make certain allowances for Keith’s autism, and her final decision that it is both useless and unfair to try to turn him into a neurotypical. This awakening came only after much struggle, but I applaud her for finally reaching it. No one at all in my amerikan life has come to such an awakening regarding me, and I envy Keith his good luck in finding her.

Keith also has made compromises that earlier he could not have made. But the more Sarah accepts him as he is, the more willing he becomes to try some small, cautious ways of adjusting some of  his autistic reactions. Kindness breeds kindness, back and forth between two people. Isn’t that something we’re always told? But how often do we practice it, or find it being practiced on ourselves.

Here are some of the multitude of quotes I cling to in this extremely enlightening book:

(sarah) No two people with AS will display the diagnostic characteristics in the same way or the same degree, due to differences in the condition and also in personality, background and many other factors.

(keith) I couldn’t tolerate the process of looking after myself…  I pretty much shut myself off from the world for about seven years.

(sarah) … some people with AS… simply tell the truth and have no concept of whether it is appropriate or helpful to do so. The truth is all and no one can possibly have any issue with it, as it is an inescapable thing.

(keith) Looking people in the eyes hurts. … I just wish for some simplicity in communication… Frankly, I have no friends… anyway, don’t they just disappoint you and let you down?

(sarah) He views much social conversation or small talk as shallow and pointless…

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read…  Lifelines…    Stolen stars

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

born on a blue day

tuesday 29 may 2012

The title of Daniel Tammet’s famous book, which I’ve recently read for the first time. Daniel not only has Asperger’s, but he is also a mathematical savant. And he is a synesthesiac. This is quite a load of special endowments to land all in one individual. I envy him the synesthesia, to be honest, which I myself only have in an extremely inferior degree. I’m afraid I don’t envy him his mathematical genius, because I’m one of those rather infrequent Aspies who gets both a headache and a stomachache thinking about math. I am an Aspie of the word, and the musical note, and the visual image. But you can keep most types of numbers as far away from me as possible.

While I found the stories of Daniel’s astounding abilities fascinating, as almost anyone would, I found his writing style to be one I’ve seen in many other Aspies: somewhat rigid and step-by-step, and not very good at holding my attention, even when the subject matter is highly interesting. That made it a challenge to actually finish the book, because a writing style that leaves me flat — whether done by an Aspie or an NT — is a thing that will very often make me put down a book and never pick it up again.

Literary criticism notwithstanding, certainly everyone with Asperger’s should read this book. And every savant. And every genius of any kind. Learning how the various types of human brains work presents twists and turns and amazement of all kinds.

Daniel says any number of things that resound loudly inside my Asperger’s self, and perhaps in yours too. Here are a few of them:

 

“Predictability was important to me, a way of feeling in control in a given situation, a way of keeping feelings of anxiety at bay…”

 

“I have always loved animals, from my childhood fascination with ladybirds to avidly watching wildlife programs on television. I think one reason is that animals are often more patient and accepting than many people are.”

 

“… depression… is a common issue for individuals on the autism spectrum.” (referring to his brother, who has Asperger’s and serious depression as well)

 

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read…   Mental hell…  Spite and malice

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all photos, graphics, poems and text copyright 2010-2012 by anne nakis, unless otherwise stated. all rights reserved.

be different

tuesday 8 may 2012

Be Different is the title of John Elder Robison’s latest book. I haven’t read it, though I’ve read his first book (Look Me In the Eye), all of his brother’s (augusten burroughs’) books, and have just finished his mother’s (margaret robison’s) book, The Long Journey Home. I also have a book of her poetry. This family spent a good chunk of time living in western mass, where I live. There’s depression in this family, and anxiety, so I have an interest. There’s Asperger’s in this family too, so I have an interest. And like mother Margaret, I too am an artist and poet, so I have interest.

But I can’t read John Elder’s latest book. It’s the title that’s barring the way. There are indeed Aspies out there whose lives have gone the way John’s has (from what I know of it, which isn’t vast knowledge to be sure). While very young he was lucky enough to know people who knew people in KISS, and so he found a great niche there designing special effects and sound systems. Tinkering with machinery is one of John’s Aspie perseverations (most Aspies have them), and by all reports, he is a whiz at such things. He was able to start his own auto repair business. He is, as far as I know, currently married to his second wife, which means he found at least two women in this world who could love him and make efforts to understand/live with his Aspie differences. For him, and for some other Aspies, being different has paid off.

Then there are the others, and I know full well that I’m not the only one. Those for whom being different has only brought repeated failure, repeated bullying of a dizzying variety of methods, repeated doomed attempts to find a human being who can give love, who will stay, who will learn about the condition. There are Aspie success stories, and there are Aspie non-success stories. In this blog and in my book (www.autisism.wordpress.com), I’m here to write one of the bleak, non-cheerleading stories, hoping that in at least some very limited way, I speak for other Aspies for whom being different has not paid off.

So the title bars the way. I fear a book of excessive optimism, a book of happy phrases telling us how great it is to be autistic, what great things we can do, what great, understanding neurotypicals we can find. My fifty-odd years of living have not borne out all this greatness, and I constantly find other Aspies online whose lives have also not borne this out, this laudable, promise-laden state of being different. For those Aspies (Temple Grandin, Jesse Saperstein, John Michael Carley, and many more) who have been able to find the niches and the people in whose safety they could shine, and do shine, optimism I’m sure makes total sense. But from where I happen to sit at age 50+, and from places where other Aspies of varying ages sit, optimism comes very close to being denial.

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read…  Neverending solitaire    
       Scealta liatha… 
 

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the loquacious brain

monday 22 august 2011

I recently read the book (something I can seldom do anymore) Shadows Bright As Glass by Amy Ellis Nutt. It details the brain injury and aftermath of a man named John Sarkin. It’s a book that’s jammed full of fascinating information about the brain in general and this man’s experiences in particular. I have used one of Ms. Nutt’s chapter titles for the title of this post. And I’ve done this because I myself have one of those very loquacious brains, and have known others with them too.

Among many other things that happened to Sarkin was this: after his brain damage was finished happening, and it was a process, he had an absolutely compulsive need to write and paint and draw. This stays with him still, as far as I know. He really can’t do much of anything else. He writes and paints and draws wherever he is, with whatever materials happen to be lying around. He cannot stop.

One of the specialists whom Ms. Nutt quotes in the book is Alice Flaherty, a neurologist at Harvard, and one who worked with John Sarkin. Here are some samples, all taken from the book.

1.  “In many ways, Flaherty said, Sarkin was a classic case of Waxman-Geschwind syndrome, a personality disorder characterized by excessive verbal output, an intensified mental life, and an obsessive preoccupation with detail.”

2.  “Psychologists have retrospectively identified hypergraphic writers, painters, and scientists, including Fyodor Dostoyevsky, Vincent van Gogh, Agatha Christie and Stephen King.”

3.   Flaherty believes it is the limbic system, the seat of our emotions and our most primitive drives, that kicks creativity into hyperdrive in those artists, writers and thinkers who exhibit hypergraphia, and it is suffering and pain that pricks the limbic system into life (italics mine). “…..   “Some scientists, in fact, believe that the act of compulsive writing and art may be an attempt to understand or manage the deep complexity of existence.”

I’m not saying that I disagree with any of Ms. Flaherty’s insights, which I happen to think are very keen. What eternally bothers me about psychiatrists and some neurologists is that every single bloody thing in this world that does not  conform to an arbitrary definition of “normal” (who the hell made that definition anyway? freud? jung? who?) has got to have some loopy label put on it and be classified as either a syndrome or a disorder. If you wash your hands more than somebody or other wants you to, you’re obsessive-compulsive. If you have trouble with small spaces, you’re claustrophobic. Whatever happened to things being just part of the huge variations in human personality? Where did that go? It used to be: Joanie always likes to have clean hands. Walter doesn’t do well with heights. Mary gets her really down periods. Mike is a good guy, but he’s got a hell of a temper. The wide range of possibilities in human personality. Not anymore. Joanie is OC, Walter is acrophobic, Mary is depressive, Mike needs to go to anger management classes. Why isn’t it that just the most extreme examples (like poor Sarkin) get the labels thrown onto them, and the rest just be the way we human beings can be.

Certainly in John Sarkin’s case, his need to create is very extreme, and maybe because of that it deserves labels and syndromes. And then I look at myself. Since the horrifically traumatic events that occurred in my life in 2008, I’ve been writing much, much more than I ever wrote before. Do I have hypergraphia, according to the psychobabbles? Do I have Waxman-Geschwind syndrome? If any psychobabbles would show up here and leave me a comment: yes, anne, you have one or both of those disorders, I might just answer them this way: So what. Who does it hurt that I write a whole lot? I’m doing the best Ican after a fatal blow to my psyche, after everyone I love was stolen and killed, after the worst trauma of my trauma-filled life. I’m not able to kill myself for some reason, so I write. I have no family to take care of anymore, so I write. Just as John Sarkin is doing the best he can after devastating injuries to his brain, I and many others are doing the best we can after equally severe injuries to our psyches. Leave us alone to get on with it.

I myself have always had an extremely loquacious brain, and I’ve known a few others who were that way too. I’ve always had a need for stimulating conversation, reading, writing, drawing, music, making things. The writing and conversation parts have become many times stronger since the events of 2008. So what. I have no one to talk to most of the time, no one to have stimulating conversations with, so I write even more. My brain has a huge need to communicate, in one way or another, and so does John Sarkin’s now. Maybe one of you reading is like that too. Why do we have to have so many labels slapped on so many things. This is the infinite variety of human brains, and human personality. If you paint pictures all day long, so be it. I bless you in your painting. You’re not hurting anyone, as far as I know. Maybe people like us are simply trying to “manage the deep complexity of existence,” and the deep complexity of the pain we’re in.

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read…  Lifelines…    Stolen stars

 

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groucho

thursday 19 may 2011

He belonged to my parents, ultimately, but that’s not how it was supposed to be. He was born in the basement of our house during the first semester of my senior year at college, 1974, or maybe even during my junior year in 73. I wasn’t at home for the blessed event, but when I got there for my Christmas break, my brother’s dog Nipsy was installed in the basement with her new children. The father of this bounty was, I think, a dog called Alex who belonged to brother’s friend. The mom had been named after the comedian Nipsy (Nipsey?) Russell, a favorite of brother’s at the time.

At the time that I arrived on the scene for a month’s break from academe, negotiations were going on between Dad and second brother about keeping second brother’s favorite puppy. My parents already had one dog (I’m pretty sure it was the little Scottie), and didn’t want to go through puppyhood again. And you can’t blame them. They were past 45 and had raised a bunch of puppies in their lives, and it’s a lot of work. Back and forth it went, and while my father protested every single time, dragging out the list of reasons to veto (a list that included brother two’s lack of track record for taking care of any animal), I knew by my father’s tone of voice and the slight twinkle in his eye that he wasn’t going to deny my brother this, no matter how effective a battle he pretended to wage.

Black lab-mix puppy was kept. Was called Groucho after brother number two’s favorite comedian, Groucho Marx. In the cement-floored cellar of our house far from Hollywood, Nipsy Russell had given birth to Grouch Marx. Or Marks. However they spelled it.

Groucho lived a long and storied life, dying on 18 May 1990. He was pre-leash-law days in our town, so he chased cars and rabbits and kids and whatever else. He was hit by drivers of cars twice. Yes, my father had a weakness here about young labs: he felt they needed to run. And though Groucho was hit twice and was lucky not to have been killed, my father did not begin restraining him on a dog run until he was at least several years old. He was a big, sloppy, frisky, absolutely harmless lab, like so many of that breed. He chased kids because he loved them and wanted to play, and while most kids around us understood this, a few did not.

Groucho was special for another reason too, in that he was my daughter’s childhood dog. We lived with my parents for her first five years, and she was a dog person from the time she was still in diapers. She and Groucho were great pals for the ten years they had before he died.

And what of brother number two? It was the same old story. He didn’t take care of, even halfway, the animal he’d asked for. Lost interest in training pretty quickly, and as I was away a lot for school and couldn’t help much, the work of the puppy fell to my parents. For all the years that Groucho lived, my father would pull out at every single family gathering, large or small or important or not, the refrain brother number two had used in his campaign to keep the puppy: You’ll never know he’s around, Dad. It became part of the family lore to the point that we would all say it, both to brother number two himself and to each other when he wasn’t even around. Every time Groucho came home covered in mud,  or chased a car halfway across town and Dad had to get into our car to go fetch him, or brought home a snout full or porcupine quills, and all of his other mischief, at least one of us would say it: You’ll never know he’s around, Dad.

Well, he hasn’t been around now, for twenty-one whole years. I remember him with laughter and affection, and with gratitude that he was the first dog who ever showed my very, very small child how great it is to know a dog.

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read…   All my stars…     Stolen stars…    Mugsy’s book

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silky

monday 16 may 2011

This friend was a rabbit; the first rabbit I’d had since Peter II had died so young several years before. Though Silky lasted a bit longer than Peter did, she was fated also to die too young.

I got her in the fall of 1987 to be a companion for a white guinea pig whose older black guinea pig pal (Smoky) had died in the spring. I’d seen the pet shop housing young rabbits and pigs together, so I decided to try it. I decided to go from black and white in the same cage to white and white. The only markings Silky had were some small, very pale grey patches on her ears, mouth, and a couple of her feet. While all rabbits have soft, smooth hair, Silky’s was unusually so — I’ve never felt a rabbit so soft — and that’s why she got her name.

When her first spring came, Silky got sick. I took her to the vet, the vet said she was in her first heat, and that some animals do get sick at that time. We pulled her through that one with antibiotics, yogurt and some additions to her diet. But she came into heat every month through spring and summer, and every time, we had to pull her through. If rabbits come into heat in the winter months, they do so at a much less intense level, and Silky was, for her two falls and winters, as healthy as any other rabbit.

But in 1990, the spring of course came again, and Silky in her second spring got much sicker than she had in her first. We couldn’t get her through it that time, the vet and I, and she died when she was less than two years old.

I had her such a short time that I feel, these long years after her death, that I hardly had her at all, hardly knew her. That’s one of the objectionable things that time does. I have to console myself with the knowledge, yet again, that while she was with us, I did indeed know her very well, even if now particular memories of funny things she did, and naughty things she did, and spats that she and Snowball (the white pig) sometimes had, are all faded and I can’t report them here with any detail. She was so soft. Even the vet said when she met her that was she was unusually soft, and that her name fit her.

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read…   All my stars…     Stolen stars…    Mugsy’s book

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high-functioning adults with asperger’s

Wednesday 9 February 2011

Sunday I came across a reference to an article discussing the fact that “high-functioning adults with Asperger’s may not understand other people’s intentions.” I didn’t go and read the article itself, as I had other things to do. But boy oh boy, what an understatement: May not understand other people’s intentions. For myself, I would have to revise the sentence to read: rarely understand people’s conscious intentions. Because for myself, I don’t have nearly as much trouble with people’s unconscious intentions. The anger that they’re trying to hide, but you can feel it. Or the jealousy. Or the desire to use you, or whatever else. These subconscious, or conscious-but-I’m-tyring-to-hide-it-from-you, ulterior issues are often easier for me to grasp than the person’s planned intent.

What is their intent? What are their words that they just uttered trying to elicit from me? What is that particular sort of smile intended to make me feel? What does pretending to be fond of me when they really are not do for them, and what is it supposed to do for or to me?  What do they mean? What do they intend? What is their agenda?  Because if there is one thing I’ve finally figured out  — and it took me decades — it’s that non-autisitic people do, in fact, always have an agenda. Every word, every facial expression, every tone of voice is either consciously or unconsciously designed to produce a certain effect in and get a certain response from the person they’re performing for. Neurotypicals are always performing, and trying to manage others, and trying to manipulate others.

And while I can’t speak for any other high-functioning adult with Asperger’s, I can say that for me non-autisitc people’s intentions are a nearly incomprehensible minefield, a constant source of anxiety, a constant source of hurt, a stomach-sickening ordeal that I don’t get free of until I’m dead, apparently.

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(part of the book Neverending Solitaire)

all photos, graphics, poems and text copyright 2008-2011 by anne nakis, unless otherwise stated. all rights reserved.

 

sile

Friday 14 January 2011…    Turning white

This word is not pronounced to rhyme with tile. It’s the Irish spelling of the name Sheila, and that’s how you pronounce it. Síle was Miri’s daughter, one of those three that I’ve already said Miri produced. Of the other two, Julie died young, and Zachary will come up again in the spring. I’m ashamed that my memory isn’t absolutely positive about when these three hatched, and I can say with only a 90% degree of certainty that it was in April of 1995.

Síle was a very light grey, and had her family’s happy nature in a double portion, as her father was also her grandfather. All zebra finches have happy natures, as far as I’m concerned, and maybe it’s my biased mother’s eye that leads to me to believe that the line of my Romi and Juliet was an even happier crew. Or maybe not. Maybe they really were.

As the numbers in my finch family were lessened by age and death, by early in 1998 I had only one possible mother left, and it was Síle. I would cage her mostly with her uncle Pepper, and though she and Pepper did try more than once to make a family, she would always peck the eggs open after a few days of sitting. I didn’t know whether this was because she knew the eggs were infertile, or whether she was simply not mother material. Whichever it was, it resulted in the fact that when she died in January 1999, she left behind only her brother and her uncle, effectively ending a family that had begun in 1991. I would try one more time in 2001 to keep this family going by getting a new female to pair with Síle’s brother, but I had waited too long, and it didn’t work. Síle was the last lady of Juliet’s big family that I said good-bye to, and there were never any others after her.

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all photos, graphics, poems and text copyright 2008-2011 by anne nakis, all rights reserved.

(part of the book All My Stars)

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we’re all going to die

Page Eighty-two

Sunday 12 December 2010…  Turners twits

In 2005, I read the very popular book by Cathcart and Klein, Plato and a Platypus Walk into a Bar: understanding philosophy through jokes. And in this book Icame across a short summary of one of Martin Heidegger’s most famous ideas, and for my money, one of his most trenchant. Heidegger was an existentialist, and this is the idea in question:  We are all going to die, and since this is an immutable fact of every single person’s existence, then the best thing we can do with our time to live is to spend our days doing whatever it is that gives our time meaning and purpose. How simple, and how true. It isn’t about making  money or being some kind of hero or publishing thirty books, at least, not as such. It’s about doing what gives you meaning and a sense of purpose, and therefore fulfillment. For some that might be making piles of money or publishing piles of books, but each one of us has to find what it is for ourselves.

And when I thought on this idea, I realized it was what I had been doing, or trying my damnedest to do, all my life, without ever articulating it. The things that gave me this meaning and this purpose were these: animals, nature, books, art, music, and good relationships with a few humans, in descending order of importance. But the human part was always an ordeal, and while I never completely stopped trying to find those meaningful relationships with humans, by the time I was in my late thirties, I was putting more and more animals and nature and books and music and art into my days. The things from which I drew meaning without pain, and purpose without cruelty, and fulfillment without abandonment. All my life I’d been doing what I could to practice being toward death, the phrase that names Heidegger’s idea, without even realizing it.

I would have found meaning and purpose from love relationships with people if they hadn’t always been so fraught with things I simply cannot cope with. Maybe all human relationships are fraught with these things, and other people are strong enough to deal with them and I am not. That’s certainly possible. I have Asperger’s syndrome, which makes me greatly subject to bullying and also greatly unable to understand or condone many types of human behavior. From way back in the toddler days, I’ve found animals endlessly fascinating and humans endlessly disturbing. And as badly as I wanted it, and as hard as I strove for it, I never could get that sort of relationship with a person that I needed and wanted, and in whose context I could have practiced being toward death. More and more I plunged into more animals and more nature and more books, etc. Where I was enriched and comfortable and engaged and unharmed.

From 2004 to 2007, three women came into my life who over the course of two years saw to it that my animals, the absolute center of my world, were taken from me and eventually killed. They saw to it that I became a vagabond with no apartment of my own for two whole years.  Three vicious, unscrupulous, controlling and vindictive women. Humans. They completely changed my existence, completely changed many long-held beliefs I had had, and completely changed what the words Being Toward Death now mean for me. They mean nothing, now, that Heidegger intended. They now mean this: to go through each empty, bereft hour of breathing and having a heart beat, to suffer through it every day, until the heartbeat stops. To write about my animals on the internet, to write about what was done to us and by whom, as a tribute to them, and to the love we shared among us.  To breathe every day without them, without even the knowledge of where and when they died, without the reading and mostly without art and mostly without music and going into nature still, but now with a cloud over it all and a sharp point wedged in my heart. To move every minute with loathing for every human creature.

I did not have the money for the justice a lawyer and the court might have got me when these women practiced their viciousness. The person who cannot afford a chance at justice, who has had their way of life willfully decimated by others, is left with only one thing. At least I am left with only one thing: the justice of vengeance. I’m not in a position to bring about this vengeance myself, but I hope fervently and daily, in my new configuration of Being Toward Death, that the randomness of living, the thing we call luck, will bring about that vengeance one day or another. That what went around, will come around.

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(colorwheel watch at www.whatonearthcatalog.com)

(this post is part of the book Being Toward Death)

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