Adelaide Literary Magazine No. 42, November 2020

Revista Literária Adelaide

The live-stream ended, and Mina been steadily climbing until the past hour
dumped the birthday cake in the trash. or so. Now the number stood still.

* “What happened to your art posts?”

“Adeep Densai liked your live-stream. “I haven’t posted those in months.”
Penny Thompson liked your live-stream.
Dean Sanders liked your post.” “I liked those better.”

“Total number of likes?” “They weren’t getting me enough likes. I
lost my sponsors.”
“Total number of likes: 187. Uncompleted
workouts often draw less viewers.” “And this will get you more? Mina, there’s
a thousand fitness bloggers out there. Tens
Mina massaged her swollen knee, which of thousands. You can’t stand out among
has started to ache two thirds of the way them, you know that right?”
through the Level 5 workout.
Mina stroked her stomach, trying not to
“Incoming call from: Lucy Murray. Accept?” pinch the skin between her fingers.

“Accept call.” “When my analytics go up, I’ll go back to
posting art.”
A grinning face appeared on Mina’s
Kiri, obscuring her vision. Mina swiped her “You said that six months ago.”
sister’s face onto a single lens of her Kiri
glasses, allowing the feed of likes and com- “These things take time.”
ments to continue down the other.
“Just…look after yourself? Ok?”
“Little sis! Did you have a good birthday?”
“I am.” Mina waved the image of Lucy
“Yeah.” away, allowing her feed to fill both lenses.
One hundred and eighty-eight likes. Mina’s
“Did you love the cake?” fingers clamped down on her stomach like
a pair of scissors, as if to cut away the skin
“It looked beautiful.” there.

“Your favourite.” *

“I know.” “There are three steps to a successful live-
stream.”
“Are you ok? I saw your live-stream. That
fall looked nasty.” Mina slipped out of her apartment,
trash bag in hand, Victoria’s voice chirping
“I didn’t warm up enough. Cramp.” through the headphones. “Firstly, you have
to look the part. No baggy gym pants, la-
“You might want to get your Kiri checked. dies! My new line of sportswear launches
It looked like it recommended you a workout tomorrow so be sure to pre-order today to
that was too hard.” avoid missing out!”

“I was fine.” “Kiri, pause Victorian Evans’ live stream.”

“You didn’t finish it.” “Pausing.”

“I would have.” Mina’s eyes trailed back
to the number of likes on her post. It had

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Adelaide Literary Magazine

“Show me Victorian Evans’ new sports- you were the only one at school who didn’t
wear line.” have one.”

A carousel of fluorescent sports gear “But it hurts!”
filled Mina’s vision as she pressed the button
for the elevator. Mina’s heart sank. The only “You wanted to fit in, remember? Ev-
garment that would cover her stomach had eryone has a Kiri.”
huge cut-outs on both sides. Mina pinched
her hips as the elevator dinged, ignoring a The little girl responded by looking into
woman berating a whining child who got in Marilyn’s Kiri-less face. Marilyn stuck out
with her. her Panopticon 7 crumb-covered tongue at
her, making her giggle.
“Kiri, show me my bank balance.”
“I like your hair,” the little girl said shyly.
The number was only slightly higher
than the one beside the sports top. “This old thing?” Marilyn reached up and
casually pulled the blonde bob off her head,
“Do you wish to purchase Victoria Evans’ causing a mass of blue hair to spill down her
starter workout top 5.4? back. “It’s pretty but it itches awful.”

“Hold the elevator!” “I like your hair even better now.”

Mina’s arm shot out instinctively, stop- “Me too.” She crouched down so her face
ping the metal doors from closing. was level with the child’s. “I like your dress.
Is it a special occasion?”
“Thanks,” said an out of breath voice. “I’m
late as it is.” The little girl nodded. “It’s my birthday.”

Mina swiped the purchase page off of Marilyn gave a theatrical gasp. “Your
her lens and blinked. She was sharing the birthday! Well then. Happy Birthday to you…”
elevator space with Marilyn Monroe.
Mina started. The voice from the other
Marilyn had a pair of white heels in her side of the wall.
hand and was stuffing a muffin into her face
with the other, spilling crumbs onto the el- “That’s enough, thank you.” The woman
evator floor. The woman tutted, but Mina’s grabbed her daughter’s hand and pulled her
eyes didn’t move. out of the elevator before the doors had
opened all the way. Marilyn held the doors
Marilyn didn’t have a Kiri. open, smiling at Mina.

The little girl was still sobbing. A newly “Getting out?”
attached Kiri made the skin around her eyes
and ears puffy and sore, the lenses looking “Um.” Mina fiddled with the trash bag
huge on her tiny face. in her hand, cheeks burning. The lavender
scented-plastic wasn’t doing a lot to mask
“Mum, I don’t like it,” she whimpered as the other smells. She hastily held it behind
she picked at the red skin. “I want to take her back. “I’m going down a bit further.”
it off.”
“Ok.” The doors tried to close, but Mar-
“How many times…you can’t take it off. ilyn smacked them open again, sticking out
You were the one who was upset because her hand to Mina. “I’m Anna. I think we’re
neighbours.”

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“Mina.” Mina looked from Anna’s out- The cheap lamp next to the couch
stretched hand to her own, clutching the sparked to life, illuminating a sketch of Mar-
rubbish. “Um, my hands are dirty.” ilyn Monroe with her heels in one hand, a
waterfall of blue hair covering the iconic
“I don’t mind.” Anna crammed the rest white dress.
of the muffin into her mouth. “There,”
she said through a full mouthful. “Now it She could feel it was good. It was as if
doesn’t matter.” her belly were full; the feeling after a home-
cooked meal. She couldn’t remember the
Smiling, Mina took Anna’s hand. last time she had felt that way.

* “There is an item from Victoria Evans
ready for checkout that expires in ten min-
“The second step to a successful live stream utes. Would you still like to purchase?”
is consistency. That means uploading reg-
ularly and on time. Your fans want to see The sports top flooded Mina’s lenses,
you! So don’t let them down.” obscuring the drawing. Large red letters ex-
claimed “Only five left! Don’t miss out!”
“Kiri, pause.”
“Yes,” Mina said quickly, laying the pic-
“Pausing Victoria Evans’ Tips for Live- ture to one side. “Purchase.”
Streaming.”
“You were listening to Victoria Evans’
Mina hung outside the apartment next Tips for Live-Streaming. Would you like to
to hers, trying to summon the courage to resume?”
knock. “Kiri, identify resident at this ad-
dress. Apartment 496.” Mina stood up from the couch, her mus-
cles stiff. How long had she been sitting
“Subject does not exist.” there? Her knee, still swollen, twinged as
she stood. “Yes. Resume.”
“Use facial recognition from approxi-
mately 9am this morning, elevator.” “And finally, the number one tip for a
successful workout live-stream. You have
“Ellen Campbell, age 39-” to complete your workout. Every single
time. No one’s interested in seeing you fail!
“Skip.” They want to be inspired by you! Consistent,
completed workouts while looking like your
“Margo Campbell, age 7-” best self. That is how to drum up followers
and keep them following! It’s possible if you
“Skip.” just believe!”

“All registered Kiri uses identified. Would Mina limped to her fridge, digging
you like to resume Victoria Evans’ Tips for around in the freezer section for anything
Live-Streaming?” cold. She settled on icy packet of broccoli
and pressed it against the swelling.
“Um. Later.”
“But sometimes belief isn’t enough, be-
Mina didn’t remember it growing dark. cause staying motivated is tough. Even I
It was only when she realised she couldn’t need a bit of motivation sometimes! But
see her pencil in front of her face did she
put down the sketchpad.

“Kiri, turn on the lights.”

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ladies, I have a big announcement for you. A “And now,” Victoria Evans’ trilled. “Push-ups!”
game-changer to allow you to truly become
your best self.” Mina dropped to the floor, ignoring the
pain in her wrists and her shaking arms as
Mina cast a glance at the far wall, half-ex- she pushed herself up, then down, then
pecting a breathy, sweet voice to drift up again. This is it, she reminded herself. If
through it. she could just get through this workout, if
she could just get Victorian Evans’ recom-
“With my new app, the Tonal Motivator, mendation, then she would gain enough
you’ll never fail your goals again! In fact, I followers to finally be able post what she
am doing a giveaway with a twenty-four wanted and she would finally be able to
hour deadline. Complete a Level 7 workout stop…
using my Tonal Motivator and I will person-
ally give your profile a shoutout on my feed “Let’s see those burpees!”
and encourage all my followers to follow
you, wonderful human!” Mina hit the floor then pushed herself
up again, slamming her hands above her
Mina dropped the broccoli. head as she jumped, landed, and felt her
knee give way.
“But remember, my offer is over in twen-
ty-four hours. This is a one-time deal, so As she missed the next peppy cue - “Give
don’t waste it! You miss one hundred per me those sit-ups, girl!” - the Tonal Motivator
cent of the shots you don’t take. The Tonal started. A low drone, like a fly, started in
Motivator: The Way to the Better You.” both ears, blocking out everything except
Kiri’s robotic voice.
“Kiri, how many hours left on Victoria
Evans’ Tonal Motivator challenge?” “To turn off Tonal Motivator, resume
workout.”
“Twelve hours.”
Mina twisted onto her back and started
“Set an alarm for 6am for a Level 7 Live pulling chin to knees, ignoring the fire that
Blog Workout using Tonal Motivator.” split across her abs as she started the sit-up
reps. The drone stopped.
“This workout is not recommended for
your level of fitness.” “Just a bit longer,” Mina gasped as the
next instruction caused her to switch posi-
“Just do it.” tions yet again.

“Confirm Tonal Motivator? This action “Mountain climbers!”
cannot be undone.”
Mina clawed her way onto her hands
“Confirm.” and knees but at the very first jump, she
felt her knee crunch and she was on the
* floor again with a howl of pain as the Tonal
Motivator switched back on.
Mina could barely see for the sweat pour-
ing over her Kiri lenses, could hardly hear “To turn off Tonal Motivator, resume
Victoria Evans’ perky instructions over the workout. The Tonal Motivator: The Way to
blood pounding around her headphones. the Better You.”
She had strapped her knee with whatever
tape she had found around the apartment, “I can’t! I’m injured!”
and it was holding.

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“To turn off Tonal Motivator, resume Her lungs began to burn.
workout. The Tonal Motivator: The Way to-
The second she emerged to the surface,
“I can’t!” gulping air, the Tonal Motivator ripped
through her again, and she plunged back
The drone was growing louder and into the water. This time, she couldn’t stay
higher, changing from fly to jet engine. under as long.
Mina clapped her hands over her ears but
this only pushed the headphones closer “Kiri, stop!”
into her eardrums.
“The Way to the Better You.”
“Kiri! Turn it off!”
Mina’s hands grasped the side of the
“Action cannot be completed.” bath as water cascaded over the sides. They
landed on something small and plastic. The
“Turn off the Motivator!” brand new razor.

“To turn off Tonal Motivator, resume *
workout.”
Anna didn’t comment on the still healing
Kiri’s voice was a canon in Mina’s ears. cuts around Mina’s eyes and ears when she
She stumbled to her feet and limped to the knocked on the door of apartment 496.
bathroom, collapsing onto the floor as she
turned on both bath taps at full blast. “Hey, neighbour.”

“The Tonal Motivator: The Way to the “Hi.”
Better-”
Anna looked at the drawing in Mina’s
Mina clambered into the tub and hands. “Did you finally bring me a house-
plunged her head under the water. Silence. warming gift?”
She floated there, feeling the water cool the
sweat on her stinging face. Her ears were Mina handed the sketch of blue-haired
burning, drops of blood spilling from her ear Marilyn to her. Anna smiled as she took it.
drums, darkening the clear water.
“I like it.”

About the Author

Cat Sole is a kiwi writer based in Sydney. She is the writer and
director of several web series and short films, including the
web series “Codependent,” and the producer and co-host of
the writing podcast “Kill the Cat”. She is currently struggling
to write this bio because her calico cat is demanding to lie on
her keyboard.

103

THE ENGLISH SUITE

by Sebastian Raedler

I. into that magnificent city, leaving behind
the frustrations and the pettiness of my up-
I make my way down the stairs, careful not bringing and immerse myself completely in
to overtax the joints. Small, deliberate steps the bustling life of Italy’s glorious capital.
are the rhythm of my days: slow and steady,
unexciting and painless. But as soon as I sit At first, my plan seemed to flounder. I
down at the piano, everything changes. I did not know anyone in Rome and spent
am mesmerized by the fluid movement of long afternoons walking along the city’s av-
my hands as they race over the keyboard, enues by myself, impressed by its splendour
following the intricate patterns laid out on and yet isolated. During lectures, I sat apart
the note sheet. They seem to be the hands from the other students who were too busy
of a younger man, full of vigour and unaf- with the intrigues in their own cliques to
fected by the ravages of time. pay much attention to me.

I am playing Bach’s Second English That changed when I got dragged into a
Suite, a piece of splendid exuberance and debate with our lecturer one day. He was a
boundless energy. It is music like a moun- conceited fellow with a nasal voice, always
tain stream or the smile of a pretty girl, in- impeccably dressed and eager to impress us
exhaustible in its charm and irresistible in with his brilliance. “The individual is worth
its allure. My fingers know the pathways nothing”, he asserted, raising a finger to
through Bach’s labyrinth without fail. De- emphasize his point: “Its only function is to
spite the piece’s audacity and speed, its ensure the stability and the well-being of
sudden jumps and reversals, they execute the group.”
it flawlessly, leaving me to sit by, dreamily
following the raucous outburst of the music. The other students dutifully took notes,
apparently indifferent to the inanity of his
I first listened to the piece more than discourse. I raised my hand: “What value
fifty years ago when I was studying in Rome. does the group have if not to ensure the
It was a mad scheme, pursuing a degree in well-being of the individual?” There was
a language I did not speak, in a city I did not a surprised silence. Some students turned
know in order to prepare myself for a future their heads.
that seemed entirely uncertain. And yet, I
could not resist the idea of throwing myself The lecturer looked at me with disdain,
then replied: “The value of the individual

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– with its insignificant plans and ambitions – talked about my decision to study in Rome,
is a modern myth, an ideological mistake, a the chances of getting my Italian in shape
dead-end street of history.” for the exams, and finally about the differ-
ences in our lives, me coming from a poor
“If the individual has so little value,” I re- family in a small town, but free to roam the
plied: “then surely it does not need to dress world, she from a well-to-do background,
up every day as though it were going to a but feeling constrained by her family’s
fashion show.” codes and expectations.

Someone laughed, but I regretted my “I wish I could be like you,” she said:
words instantly. The lecturer looked at “Leaving everything behind and simply going
me incredulously, then shook his head, as out into the world, drinking in its marvel-
though saddened by my lack of civility. He lous strangeness.”
turned and, after a pause, continued his
monologue. “I wish I could be like you,” I replied:
“Living in a villa on a hill overlooking this
As I packed my things after the lecture, a splendid city, with a butler serving me
girl sat down next to me. breakfast and a private tutor doing my
homework.”
“Non si dice: ‘show di moda’”, she said.
I was surprised how much I enjoyed
“Excuse me”, I replied. talking to this girl, who had seen nothing
of the world and yet revealed, underneath
“Non esiste: ‘show di moda’. You have to her shy surface, a vibrant imagination and
say: ‘sfilata di moda’, fashion show. If you a boundless appetite for life.
use the right words, your jokes will get a lot
better.” As we walked back to the university
where a car was waiting for her, she said: “I
She was making fun of my Italian, but think we will be friends,” as though she had
with such obvious good will that it was hard decided the matter and I had little say in it.
to be upset.
II.
“Okay,” I said: “That’s another word I
have learnt. If I keep going at this pace, I Angelina asked me to visit her the next day.
will be fluent in a hundred years.”
It was only when I walked up the broad
We walked out together into the sun- stairs of her family mansion that I grasped
shine of the plaza. The girl – Angelina – the extent of her family’s wealth. The house
seemed unsure of what to say and yet was was a five-storey marble fairy tale, breath-
unwilling to let go of our conversation. taking and intimidating in its opulence: “You
don’t belong here,” the broad gate and the
“When you say linguaggio, the ‘g’ is a soft manicured rhododendron bushes seemed
tone, not a hard one” she admonished me. to whisper as I rang the bell.

“If you correct all my mistakes, we will be I was led through a reception hall and
stuck here for a long while,” I replied. into a wide room with high windows. In its
middle stood a grand piano, where Angelina
“That’s fine,” she smiled: “I have time.” – her body straight, her face concentrated

We spent the afternoon together, first
on the plaza, then in a café nearby. We

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– was playing. She smiled when she noticed But Angelina insisted that we go and
me. under her influence I came to cherish the
magical world of the stage, the expressive
“What are you playing?”, I asked her. power of the small gestures and the play-
fulness of an art that made visible the ab-
“It is Bach’s Second English Suite”, she re- surdities and peculiarities of human interac-
plied: “Do you like it?” tion that – once you started noticing them
– turned out to be everywhere.
She played it again, the exuberant
melody whose notes seem to topple over One evening we watched a piece by
one another in pure joy and yet following Samuel Beckett. It was just as strange and
a perfect mathematical order, enchanting paradoxical as you would expect a piece
and confusing the listener to equal degree. by Samuel Beckett to be. Four men stood
on stage, not doing very much, just looking
“Come here,” she said: “You try to play it.” confused and uncomfortable. To my sur-
prise, the static scene with its lack of action
“I cannot play,” I protested: “I would not and dialogue was fascinating, as our minds
even know how to move my fingers.” were teased by the question of what the
strange set-up was meant to convey and
She pulled my sleeve to make me sit how the tension of the four bodies on the
down. “I will not tell you that it’s easy, be- stage was going to be resolved.
cause it is not,” she said: “But you will master
it if you put your mind to it. Come. Sit next The man to the right opened his trou-
to me.” sers and let them drop to his ankles. Then
the four men again stood motionless. The
I sat down sheepishly. She took my right three others glanced at the man’s exposed
hand and led it to play the first three notes legs, grinning nervously, until a second
of Bach’s piece. man opened his trousers and let them slide
down. Were we meant to be provoked by
“You see?”, she asked: “You can do that, the breaking of a taboo? Or by the human
can’t you?” tendency to imitate those around us? A
third man turned around, trying to pull the
And, in fact, the first notes were not too second man’s trousers back up, but the
difficult, unaccompanied as they were by other one pushed him away. The whole
any movement of the left hand. scene descended into a slow-motion fight
between the two factions, those of the
She was pleased with her efforts and trousers-down persuasion and those who
started explaining the next part of the piece. advocated for them to stay up. Throughout
the whole scene there was always a vague
“What does she want from me?”, I won- suggestion of meaning, but never quite
dered. What does this pretty, intelligent girl enough to for the audience to be sure what
with her privileged background and her cul- was really going on.
tured life want from someone like me?
“I love Beckett”, Angelina told me as we
III. were sitting in a café on the Via Nazionale
later that evening: “I would love nothing
I had never been a fan of the theatre. It
seemed like a prison to me in which one
was forced to sit and watch, unable to move
and fully at the mercy of the actors on stage.

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more than to create works like this, full of moved my hand and placed it on her thigh.
strangeness and poetry, fascinating, riveting She pushed it away.
and impossible to decipher.”
It had become routine between us: the
“You want to be a writer?”, I asked her. wordless rejections of my attempts at phys-
ical contact, the sharp drawing of the line
“I’m sure my father will not let me,” she where the permissible ended and the no-go
replied: “He wants me to marry and have a zone began. Angelina, normally so lively
family. That is his idea of a fulfilled life for me. and irrepressible, became sullen in these
It is ridiculous. For him, writing is a waste moments, as though terrified by the idea of
of time – but if I could convince him, yes, I intimacy. She seemed to tease me, to lure
would love to be a writer.” me in with her smiles, the careless way in
which her body was close to mine during
She looked at me directly with her dark our excursions and adventures, but then
earnest eyes, full of conviction in her deci- recoiled when the invisible boundary was
sion. crossed and I responded too directly to the
invites I thought I had received.
She paused for a moment, then she said:
“To be a writer, to be a creator of worlds, to But she did not remain in her state of sul-
entertain others with the wild play of ideas lenness for long, instead returning quickly
is the most wonderful thing in the world.” to her bubbly monologues, her wonder at
the world around us and her joy about the
Without the conversation that evening, writing project we had begun: “The actor
without the idea, which I had never enter- takes a couple of steps forward and plunges
tained before, that one could dedicate one- headlong into the audience,” she read from
self to writing, my own writing career would our stage directions. She laughed: “People
never have taken off. My novels – including are going to love it.”
A Father’s Dream – would never have been
published, nor would my plays and my es- She leaned forward and gave me a kiss
says. All these works, the awards they have on the cheek, as though rewarding me for
garnered and the performances they have my quirky ideas and compensating me for
inspired would never have materialized had her earlier rejection.
it not been for the passion with which Ange-
lina spoke about her ambition that evening. She pulled back and smiled at me. For
over 50 years, I have preserved that image
IV. in my memory: the fine lines of her face,
the vivacity in her eyes, full of innocence
We were sitting in the shadow of an oak and confidence that we belonged together.
tree park in the Parco de Villa Ada, Ange- Behind her was the perfect Roman park
lina leaning her head against my leg, read- landscape, a few clouds in the sky and the
ing from the scene we had just written. She majestic trees all framing her dazzling smile.
was laughing about the dialogue we had
cobbled together: “It does not make any V.
sense whatsoever”, she said: “I love it.”
I was sitting alone in the grand piano room,
It was a perfect moment: the gorgeous practicing Bach’s English Suite.
park around us, the unfiltered sunshine, the
beautiful girl leaning against me. I slowly

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Adelaide Literary Magazine

I had told Angelina how much I adored life on his expectations. It is a terrible way
the piece, how perfectly I thought it cap- to live.”
tured her character: her liveliness, her lim-
itless energy and the sheer joy of existence She turned and looked at me with her
she exuded. frank, open eyes: “I will never let anyone
dominate my life like that.”
“Whatever happens to us, this music
will always remind me of you – and of this Now Angelina was at her French lesson
summer that we spent together,” I said. and I was sitting at the piano, facing her fa-
ther who slowly came walking towards me.
“Who says that it will only be a summer?” It was as though he had chosen the moment
she replied. for maximum effect, me sitting meekly at
the instrument that I barely knew how to
She insisted that I regularly come to her play, while he was towering over me, sur-
house to practise the piece. I protested that rounded by the luxury he had created.
this would impose an impossible burden on
her family which would be forced to endure He stopped next to the piano and looked
my inept fumbling on the keyboard: “If you at me. Then he smiled. We had not spoken
want me to get along with your parents, this before, but he obviously saw no need for
is not the right way to go,” I told her. an introduction. He gestured at the instru-
ment: “Tocca!”, he said: “Play!”.
But she would not hear of it. “Once you
have mastered the piece,” she said: “You I played the first four bars of the pieces
will be proud of yourself. And if the music I had learnt so far, but as I did, the whole
reminds you of me, you will be able to con- ridiculousness of the situation bore down
jure me up wherever you go.” on me. Crouching over the piano next to the
imposing figure of Angelina’s father I felt
So, I sat in the piano room, dutifully stupid and uncultured. I was sure that this
moving my fingers, half embarrassed by was his intention: to make me understand
their clumsiness, half excited about the that I did not belong in his world.
prospect of one day being able to play the
marvellous piece with the same fluidity and He put his hand on my shoulder, a ges-
skill with which it flowed from Angelina’s ture that could have looked supportive, but
hands. felt like an assertion of dominance: “If you
keep practising,” he said in a slow voice:
The door opened and Angelina’s father “Maybe one day…” He let his sentence trail,
came in. He was a tall man, with a broad then smiled: “Who knows. Maybe one day
nose and thick eyebrows. Angelina had told you will be able to play.”
me about him: his modest origins, his suc-
cess as a stockbroker, his ruthlessness and If only he could see me today, the flu-
determination. She was in awe of his energy idity with which my fingers move over the
and his achievements, but also repulsed by keyboard, the effortlessness with which
his imperiousness. they execute Bach’s puzzles. I wonder what
it would have been like if I had played like
“I pity my mother”, she said: “For she this on that spring day in Rome, if I had im-
loves him, but she fears him even more.” pressed Angelina’s father with a brilliant ren-
She let the sentence hang in the air for a dering of Bach’s complicated composition, if
while, then she said: “She has modelled her I had been able to make a statement of who

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I was. But these are fruitless thoughts, for in “I want it to be like this forever: these
that moment I was not capable of playing. lunches, these conversations, the process
Instead, I broke off and stared at the key- of writing, of inventing and creating worlds
board before me, his hand still resting on together,” she beamed.
my shoulder.
Her enthusiasm was endearing, and yet
VI. I felt the need to stop her: “It’s so easy to
say ‘forever’,” I cautioned: “But what does
Angelina and I were sitting at the back ta- it mean? It is easy for us to feel an intense
bles of a small restaurant, our papers scat- connection to another person, but – who
tered on the table before us. It had become knows – that connection might simply dis-
a daily ritual: we would go for lunch after appear one day.”
class and, while eating, would jot down
ideas for the play we were writing. Our I am not sure why I said this. I loved her
ideas flowed naturally from our conversa- and I knew I did. This marvellous princess
tion, inspired by the theatre pieces we had had chosen me as a companion for her
seen together and the heady discussions in kingdom. She was planning a life together in
our philosophy classes. the happy sphere that we had built for our-
selves – and I was telling her that I had no
Angelina would always pay for our intention of staying. Maybe I felt the need
lunches. She would do so in an offhand to create some space between us after days
manner, dropping the money on the table of almost ceaseless conversations or maybe
as though it was an inconvenience she it was a silly way for me to take revenge for
was getting rid of. She was used to having the awkward situation with her father she
money, for it simply to be there, while I had had put me into.
to watch my expenses carefully. As soon as
she had discovered how important money “What are you trying to say?”, she asked.
was for me, she had made sure that I never
paid anything while we were together. I did not have the courage to respond.
She looked at me sceptically. Then she said:
“I want our stories to capture the weird- “Let me read something to you.”
ness of human existence. And I want it to
be like a piece of music, flowing joyfully and She took out her notebook, looked for
inebriated by its own energy. I want it to be a passage she had noted down and then
like the English Suite: so light, so ecstatic,” started reading:
she declared.
“It is strange to wander in the fog.
She seemed transformed during these
days of our writing together: all her shy- Each bush and stone stands alone,
ness and reticence had disappeared. It was
as though the protected girl, who had al- No tree sees the next one,
ways been alone with her thoughts and her
projects, had finally found the companion Each one is alone.
that allowed her to translate her dreams
into adventures and her vague ideas about My world was full of light
being a writer into reality.
When I was still with my friends

But now that the fog descends

None is to be seen.

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No one is truly wise posedly to study for our exams, but in real-
ity daydreaming and taking in the late-af-
Who does not know the dark ternoon sun.

Which forever keeps him apart “He does not like anyone,” she replied dis-
missively: “And that is why no one likes him.”
From his fellow men
She turned to me. “Do you know what I
It is strange to wander in the fog, most admire about you?”, she asked.

To live is to be alone. I was not sure how to respond. She
rarely spoke about me in such a direct way.
No man knows another, I shook my head.

Each one is alone.” “It is that you simply escaped from your
previous life, that you decided that it was
“It is beautiful,” I said: “Did you write it?” not good enough for you and that you had
the courage simply to walk away from it and
She shook her head. “Why did you de- to come here.”
cide to leave your home and come here?”,
she asked. She said this with great earnestness
as though she had given the matter some
I had not expected this question. I thought thought.
for a moment. Then I said: “I could not stand
the constant criticism. My mum had this “Sometimes I think”, she continued: “that
fixed idea that I would never finish anything I I should run away as well. I know that my
started. ‘You always leave everything halfway.’ life is comfortable, but I cannot allow my
It was like a constant refrain, as though she father to dictate my decisions to me. It is
had formed a conviction of who I was – and unbearable. I fear that I will be forced to live
nothing I did could change it.” someone else’s life, just as my mother does.
It is not for my father to decide whether I
Angelina thought about my answer for a become a writer or not. It is not for him to
while, then she said: “The problem is that decide who I spend my time with. He has to
you do not trust people. You are like the accept that these are my decisions. Other-
voice in that poem: you have convinced wise I will have to leave.”
yourself that everyone has to stumble
through the fog alone. But it is not true. If “But did you not tell me that people be-
you have found someone you like, you can long together – and it was just in my silly
simply decide to stay with them.” world view that they were naturally drifting
away from each other?”, I asked cautiously.
She smiled at me: “Don’t worry. I will
show you.” She leaned forward and kissed She had her answer ready: “Only the
me on the cheek. It was one of the rare mo- people who have chosen to be with one
ments of physical intimacy she allowed, as another should stay together. It’s not the
though she wanted to encourage me to see same with the people into whose company
the error of my ways. you have been born accidentally.”

VII. I had to laugh at the ferocity of her reply.
“In that case, we should maybe run away to-
“I don’t think your father likes me”, I said to gether,” I said.
Angelina, as we were lying in the park, sup-

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“Yes,” she replied without missing a beat: I was alone with the shadow before me.
“I think that’s a good idea.” Angelina’s father took a step towards me.
He said: “Non sei l’uomo giusto per la mia
VIII. figlia”, then repeating in slow and careful
English: “You are not good enough for my
On our last night together, Angelina and I daughter,” putting an emphasis on every
were sitting on the Hollywood swing in her word.
parent’s garden.
I had felt fear when he had first ap-
We had spent the day revising the draft peared, but now I was angry. Who was this
of our play. The university year had finished man to judge me? Who was he to tell me
two weeks earlier. We no longer had any that I was not good enough? “I don’t need
lectures and could dedicate ourselves en- any of this,” I said: “This whole world of
tirely to our project. yours: your house, your wealth, your family.
It is nothing to me!”
After hours of writing and debating and
after a tense dinner with her parents, we I took a step backwards, as though to
enjoyed the warm embrace of the Roman repulse his attempt at intimidating me, his
summer night. bid to convince me of his superiority. Then I
stormed past him, towards the garden gate.
Angelina looked more stunning than Angelina, who had watched the scene from
ever, so fresh and so alive, animated by the the balcony door, called after me.
joy about our play and bronzed by the re-
lentless Roman sun. As we sat on the swing, That was the moment in which I should
I could not resist placing my hand around have stopped, in which I should have turned
her waist. Normally, that would have been around and allow her to calm me down. It
a breach of etiquette to be sanctioned by was the moment in which I should I have re-
an impatient reprimand, but that day she alized how little her father mattered in com-
let it happen, her eyes closed and her lips parison to everything that linked us. But I
smiling, as we listened to the concert of the didn’t. It was Angelina who had brought me
cicadas around us. into this pitiful scene, into this humiliating
position of being told that I was not good
I moved closer to her and kissed her on enough.
the lips, the precious features of her face
close to mine. She did not react, but nei- I could hear her voice behind me, but I
ther did she repulse me, as though quietly kept walking, down the hill towards the city
consenting to a gesture of affection that no that was sparkling in the distance.
longer seemed inappropriate.
IX.
There were steps on the path before us
and we looked up. It was Angelina’s father, I often wonder what would have happened
his face made invisible by the garden lights if our friendship had continued after that
behind him. blissful summer in Rome. If we had con-
tinued our writing sessions, the long hours
Angelina shrieked. “Go inside,” he said in the small, cosy restaurants, imagining
calmly and she obeyed, adjusting her blouse lives for our characters, laughing about our
and hurrying past him.

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ideas – if all of that had continued for a life- Instead, I kept writing, just as Angelina
time. I wonder what life would have been and I had planned to do, basing my books
like if we had escaped together. on the ideas we had tossed out together
during our long Roman summer. And I kept
I imagine coming home in the evening, practising on the piano. With the years, my
opening the door, hearing the piano notes stumbling play turned into solid compe-
floating through the entrance hall. Angela, tence and finally into mastery. Bach’s piece,
sitting at the piano, playing the English Suite, which once seemed a thing of impossibility
our music, to welcome me back. I imagine to me, now flows from my hands with the
the plays we would have written, the excite- greatest naturalness. I sometimes wonder
ment of seeing them performed for the first what Angelina would say if she could hear
time, reviewed in the press, interpreted dif- me play today, her young, untalented dis-
ferently by different actors, our ideas turned ciple surprisingly arrived at mastery.
into flesh, into real voices and real bodies.
I wonder whether she has read any of
But none of this has happened. Instead, my books. I wonder whether she herself has
I’m sitting by myself at the piano and let my succeeded in her rebellion, whether she has
fingers run over the keyboard, following managed to push aside her father to realize
the lines that Bach has set for them. The her plan of becoming a writer – or whether,
melody runs off on a tangent, then re-turns once the main plank of her escape strategy
to the main theme. Everything is planned had broken away, she folded back into her
and structured. Everything in this music father’s expectations, quietly resigning her-
makes sense. It is an antidote to life: instead self to family life.
of chaos and messiness, the perfect sym-
metry of the patterns, the joyful harmony Of course, she was right. Of course, we
of the notes. belonged together. Of course, we would
have written magnificent works together,
In the days following my escape, I waited inspiring each other, pushing one another
for Angelina to call me, to apologize, but all along on the path to books and plays that
I got was silence. I finally decided to leave would have made us proud. And yet, it
Rome, upset about the insults and confused did not happen. Instead, I have continued
about what had happened. I did not return my own path through the fog, acciden-
for the start of the next university year, in- tally meeting people and then losing them
stead continuing my studies at home. again. Yet, despite everything Angelina has
remained with me: in the dream of a life
No other woman has ever filled the place spent writing and, most of all, in Bach’s En-
in my life that Angelina created for herself. glish Suite, the anthem of our summer, the
Every new publication, every new award musical expression of the young girl’s smile,
brought its share of admirers, readers and which has remained with me to this day.
journalists eager to open their lives to the
voice that told these stories. But I was not I often ask myself why I ran away that
interested. I had felt the irresistible pull of night. I could not let myself be pushed
Angelina’s body in the Parco de Villa Ada, around, insulted and looked down on the
but now found myself indifferent to what way Angelina’s father did. But maybe that is
these women had to offer. Compared to An- an excuse. Maybe I ran away from our hap-
gelina, they seemed ordinary and dull. piness because I did not trust it. And in a

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strange way by deserting it I have managed I rest my fingers on the cool keys of the
to preserve it, by not living it, by leaving it piano – and, after a pause, I begin to play
in a state of imagination, by conserving its again. I sit and listen to Bach’s gorgeous
beauty in my memory instead of sallying music floating through the empty space
it with the stains of real life, I have kept around me, as crisp and sumptuous as ever.
it precious. In my memory, Angelina has It conjures up the spirit of our summer in
remained agelessly beautiful. This is the Rome and the smile with which Angelina
woman I have spent the last 55 years with, looked at me in the park that day. Every-
happily, without fights and in constant ad- thing is as it was back then, beautiful and
miration. perfect.

About the Author

Sebastian Raedler has studied philosophy and public policy
at the University of Cambridge and Harvard University
– and holds a Doctorate degree in philosophy from the
University of Cologne, Germany. He works as a financial
analyst in London.

113

THE COMPANY OF
TREES

by Gary Delmar Jaycox

I’ve long been able to converse with the where it was hollowed-out near the ground
trees. Well, with some trees anyway. Ma- as if sculpted or molded that way by some
ples and oaks mostly. Sometimes birch and magical force. Sitting in that one spot, I
elm. But never with pine, spruce or hem- found that if I scrunched-in my shoulders a
lock. Trees that sprout soft green needles bit and then leaned in backwards, I could fit
don’t speak to me. Frankly, I don’t think any partially inside the tree. It’s hard for me to
of this is all that unusual. Not anymore. Not describe now, but it was like I could actually
after all this time. I can still remember our become part of that oak. I’d sit that way for
first conversation clear as day. Like it hap- hours at a time. Just to think. Or sometimes
pened just yesterday. It was during my sum- to talk things out with myself.
mer vacation. The one that followed third
grade. I guess I should mention….that was the
summer that my sister died. That’s right.
My family and I had just moved into our She was out riding her bike in our neigh-
new house the year before. Into a neigh- borhood one afternoon with her new friend
borhood of modern homes bounded by from fifth grade when an ice cream truck
safe wide streets. All of it shaped by early cut a corner and mowed them both down.
1960’s post-war optimism, growth and They died instantly right there in the street.
prosperity. We had a lush green lawn out At least that’s what I was told. It happened
back complete with a swing-set newly pro- just days after school let out for summer
cured from the Sears & Roebuck catalogue. vacation. Not four blocks from our new
And, out past our new swing set, out be- house. Things got kind of quiet after that.
yond the tool shed that my Father had just My Mother spent most of her days sitting
painted Bright Barn Red, farther out along alone in our living room with the shades
the property line there stood a solitary oak drawn shut to block-out the sunlight. My
tree that had to be close to a hundred feet Father still went to work but when he came
tall. The tree was big, thick and round at its home, well, he didn’t have all that much
base. Well, round except for along one side to say. And so, to pass away the time and

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escape the summer’s heat, I’d go out and How its world was cruelly dispatched to
wedge myself inside that tree. I’d walk on make way for the place that would become
past the idle swing-set, on past the empty my neighborhood. And how, in the end, the
tool shed that still smelled of fresh paint, oak was singled-out to be one of the few
and then I’d lean into that old oak if for just trees from the old forest left standing. “I
a few hours at a time to try to make some guess I just miss my old friends,” the tree
sense out of things. concluded in a diminished voice.

So, I was out there one afternoon. As I “I miss my sister,” I countered.
now recall, the air was heavy, thick and close.
Occasional rumbles of thunder echoed off “I know,” the oak said softly. “I know.”
in the distance. Resting in my normal spot,
I had just closed my eyes. And that’s when “I wish we’d never moved to this awful
I felt a series of sharp tingles or vibrations place.”
jump from the wood and run down along
the length of my spine. A clap of thunder pierced the air, and
then the tree responded, “Well, look at it
“Why are you sitting here with me?” a this way. At least you can move. You have
strange voice inquired abruptly. two legs and two feet. Someday, should you
choose, they can carry you far away from
“I guess it’s because I’m lonely,” I replied where you are sitting now. You’re not like
without really thinking. me. Rooted here in this one spot. Grounded
here. Forever.”
After a moment, there was another
rumble of thunder and then the tree vi- In the weeks that followed, there would
brated, “Yeah, I guess I’m lonely too.” be other conversations like that one. Often
on humid summer afternoons when the air
“Wait a minute. You’re a tree! Trees don’t was charged with static electricity and the
get lonely,” I said after gathering my thoughts. oak energized. With the tree’s help, I began
to understand that life was really just a series
“Sure we do,” the oak countered. “Every- of separate events that were stretched-out
thing gets lonely from time to time. Look back-to-back. That, as I got older, I could
at me, just standing out here alone all by probably expect good times and bad times
myself.” both. Happy occasions mixed in with some
sad ones too. And that none of us could re-
In between occasional booms of thunder, ally stop the bad times from happening any
the tree went on to explain that it had once more than the tall trees left standing in my
been part of a small forest. That it had once neighborhood could keep their leafy green
made its home amongst a community of colors from morphing into the bleak mono-
trees differing in their types, shapes and chrome stillness of winter. When I think back
sizes. The oak cheerfully recounted how, on all of it now, I guess what I really figured
each season, colorful flocks of birds would out that summer was that it was best to have
arrive in the spring and how latter, in the close friends. Close, meaningful friends. Like
fall, the squirrels and deer would gather that oak. And with them, to focus our ef-
underneath and eagerly ply the leaf-car- forts and energies on the parts of our lives
peted forest floor for newly fallen nuts and that we could control and change. To move
acorns. And then, how one day, the yellow through our lives together as best we could.
machines appeared along with their men.

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Whether we were equipped with two legs old-folk’s home. But we’re not supposed to
and two feet – or not. call it that. It’s not such a bad place really. I
mean, the food’s half-way decent and we
And you know, in a way, that old oak tree have different movies most nights. There’s
turned out to be exactly right. Because be- an excellent work shop located down on
fore that terrible year was done, I did move. the lower level. And lately, well, several of
With my two legs and two feet. I mean, the ladies living there have actually taken a
along with my Mom and Dad. I moved liking to me. One recently asked me out on
back to my old neighborhood. Back to my a date. Can you believe that? An old guy like
old school where I could hang out with my me going out on a date. But mostly, I like
old friends again. And, as the seasons and to spend my time out here in the park next
then the years slowly unfolded, I no longer door. When the weather warms-up and the
thought about my big sister all that much. sap begins to flow, I like to come out here. I
I eventually graduated from high school. like to pick-out a bench and then sit under
I went off to college, and then I started a the trees so that I can watch the seasons
family of my own. And on those occasions slowly pass on by.
when I had to pack-up my family to relocate
for a new job, to search for a new house to I’m going to go out on that date, though.
live in….well, I always made sure that there Most definitely. Because it’s important. You
was a tall oak or a large maple tree standing see, in this life, it’s not about how much
somewhere out in our new backyard. And, money you end up earning or about the size
you know, for me and my young family, of the house that you get to own. It’s not
there always was. about your career. It’s not even about the
number of years that you get to live. Nope.
Of course, the things that I’ve just told It’s about none of those things. See, in this
you about happened ages ago. My kids are life, what really matters….I mean, in the end,
all grown-up and they’ve now got kids of what really makes living worthwhile are the
their own. And….well, I’m alone again. What, acquaintances that you make, and the com-
with my wife having passed-on nearly three pany that you keep.
years back. I live over there now. In that as-
sisted-living center across the street. Hey, Hey, maybe I didn’t mention this earlier,
just between you and me, it’s more like an but….I can talk to the trees.

116

NONFICTION



BERNIE, DOROTHY,

AND CATHERINE

by Mary Jane White

Methodically then, not only each night, as — skimming first — I threw each arriving
Ruffin slept or not, but also during the sev- book to one side of my bed, or the other.
en hours of his first day at school, through- Good books, ones that seemed sound sci-
out the remainder of August and early ence, to one side. The near side, for re-
September, I lay back on my bed upstairs reading later. Silly books, about how your
to plunder all the resources from the back child just needs our colored lenses, sugges-
pages of my new sacred texts, my new Bi- tions for sitting on the floor together with
bles, Negotiating the Special Education your child, playing with his or her feces, if
Maze, Children With Autism: A Parent’s need be, all the quick, complete and ap-
Guide, The Handbook of Autism and Per- parent miracle cures, to the other, far side.
vasive Developmental Disorders and from As a waste of money, waste of any more of
my own carefully transcribed notes of my my time, of Ruffin’s time. It struck me there
long-distance calls with Sue in Iowa City. In had been a lot of crap written about autism.
those days before Amazon, I wrote a raft of
letters to order all the books mentioned in Sleep
these sources or by Sue as being more nar-
rowly focused on autism. I did not sleep. When
Bedtime came and he banged
Having already found so helpful the B-6 His crib and paced all night in there,
with magnesium vitamin and DMG informa- Babbling one syllable in his trance,
tion in the current issue, I ordered every avail- Happy it seemed to me, but oblivious
able back issue of Dr. Bernard Rimland’s Au- (I learned — oblivious), reading stacks
tism Research Review International newsletter Of books ordered in — in what scrap
then ongoing, and now helpfully archived at Of time — by mail.
https://www.autism.com/arri-newsletter.
And his early prize-winning book. Echoing Kanner, Bettelheim opined:
Mute autism is all the child of the family’s
Then, I read all night, every night, and
all day — during every hour Ruffin was
in school. No longer mindlessly. As I read

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Death-camp atmosphere, — helpful facts, harmful facts, and neutral
Whose refrigerator mother — nice sound rules I might need to wield–as relevant to
Bite, that! — stood humming in the kitchen my current case — our Ruffin. That’s it. All
Corner. the rest — a deep pile on the far side —
smelled faintly, or sharply of crap.
For such damage done by language
Should Dr. B. not be So, Bernie, Dorothy and Catherine be-
Marched out in blindfold? came my guides and midnight intimates
Sign that he was simple, blind — no, as Ruffin and I continued to make our way.
As Jim seemed to wander off. As an expe-
Enough that he wandered: free to plagiarize rienced parent of two typically-developing
Other subjects — harmless ones, children, Jim, and I, as a first-time parent
Old European fairy tales, of one with autism, seemed to be driven
And carelessly. apart by Ruffin’s strange behaviors for the
first time ever in our own decade and more
On the near side of my bed — there together, as at least an item. It crossed my
remained a thin scatter — three books I mind he might have recommitted to his
judged worthy of re-reading: marriage or found someone else to see. This
was a problem I couldn’t think of, or do any-
Bernard Rimland, PhD, Navy psychol- thing about. I knew better than to raise any
ogist, parent of a son, Mark, Infantile Au- argument here or over the phone with Jim
tism: The Syndrome and Its Implications about where he had disappeared to then
for a Neural Theory of Behavior, (Century for as long as a week or more. I knew Jim
Psychology Series Award, 1962,) still in print, loved to run around. Here and there, in and
an award-winning classic, still readily avail- out of everyone else’s business, to auctions,
able and updated nicely as to all the later to livestock sales, to exotic animal swaps, to
science in a Fiftieth Anniversary Edition. cut grass in cemeteries, to right and repair
headstones. He was a fully social creature.
Dorothy Beavers, PhD, chemist, parent
of a son, Leo, Autism: Nightmare Without So, I continued to take my solace in
End, (Ashley Books 1981, 1982), long out of reading. It was hard enough for me just to
print, still available on Alibris. get Ruffin up every morning, dressed, fed,
and out of the house. Only then I could I
Catherine Maurice, PhD in French liter- retreat back to my second-story bedroom
ature, parent of a daughter, Anne-Marie and read, among the briefly-brilliant leaves
and a son, Michel, Let Me Hear Your Voice, of boulevard trees sweeping my windows.
(Knopf, 1993), still in print, still readily avail-
able. Up there, in the quiet, re-reading Ber-
nie’s early prize-winning book, I came to
All these were authored by obser- appreciate how definitively he broke the
vant, intelligent and clearly-loving parents. back of Bruno Bettelheim’s elaborately em-
These, I would re-read mindfully, with high- broidered Freudian fantasies about autism,
lighters. With my three accustomed colors tales woven out of Bettelheim’s boundless
for trial-preparation–yellow, pink, green narcissism which might otherwise have
enchanted me. I actually remembered
reading the 1968 Time and Life magazine

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articles about Bettelheim’s book myself, as established autism’s likely neurobiological
thirteen-year-old girl, as all too darkly fas- causes.
cinating. Except for these magazines’ come
gawk at this car-wreck, and hagiographical Re-reading it carefully, Nightmare
articles about Bettelheim, before 1994, au- Without End by Dorothy Beavers struck me
tism had been nothing more than an odd as a salutary story from the 1960s when
word that had left a brief exotic trace across there was nothing — or not much — to
the back of my own restless, reading eye. be done about autism, when there was no
known cause and no known cure, when au-
Eventually, I ran across the ultimate take- tism, then often mistaken for schizophrenia,
down tell-all biography of Bettelheim–The and its early diagnosis were vanishingly rare.
Creation of Dr. B: A Biography of Bruno Bet- Dorothy had been finally able to sit down to
telheim (Simon & Schuster, 1997), out of write in 1982, in Rochester, New York, with
print, but available on Alibris, by journalist her son, Leo, sixteen, living in placement, in
Richard Pollak, whose brother with autism an expensive, private, residential school in
had been ill-treated by Bettelheim. Pennsylvania. But, even in 1994, as I read
Dorothy’s story, I found there remained
Here with me then was Dorothy writing much to take warning of, and much to take
about how she was plagued in the 1960s by comfort from, in her warm, wise, frank and
Bettelheim’s intoxicatingly influential ideas unsparing witness.
when Bettelheim’s 1967 book The Empty
Fortress had appeared and as a result her Perhaps, as important to me as anything,
co-workers “suddenly began to exhibit cold, Dorothy offered me the comfort of knowing
hostile feelings towards me where coop- that my passing temptation to suicide after
eration and friendship had existed before.” doing away with my own child was hardly
Catherine too, was more than a bit pestered unique. So I set those thoughts of mine
by her French in-laws’ reading “the ever-vig- aside then. Confidently. Along with any
ilant and feverish Freudians” as late as 1988. shame for entertaining them.

Both Dorothy and Catherine had come But Dorothy also pointed out other
to strong agreement with Bernie regarding signposts of early warning for my own road
the lack of any meaningful help from the ahead — here lay more dragons and myths
self-absorbed heroism of Freudian psycho- — as well as true pitfalls and long-term per-
analysts of Bettelheim’s school, or their sonal dangers. Breakdown to avoid if I could,
speculations about autism and its origins. as Dorothy suggested — to avoid becoming
How quickly, then, I joined in Bernie’s, Cath- a total recluse, as if I were not already one
erine’s and Dorothy’s scorn of the psycho- by writerly temperament, bound by the
analytical, both Freudian and post-Freudian. confidences of others I held in my profes-
Yes, I thought, here lie real dragons! At the sion and by long-standing personal circum-
very least, here sits a real toad in our family stance –- having entered into and chosen
garden. to remain in my illicit relationship with Jim
for so many years. Before Ruffin was born,
I found myself reading much more I had to admit to myself, the relationship,
pragmatically. With Dorothy and Cath- being a sort of permanent side-piece, had
erine, I found myself far more interested worked for me. No socks to pick up, no
in following Bernie’s careful argument that hamster-wheel of three daily meals, none

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of the irritations presented by two sets of explosively from the rare event, and the re-
unchangeable personal habits, just brief joy, ported incidence in the literature available
great swathes of time to work, to write and to me in the mid-1990s—of Ruffin as the
to read, to travel and to publish and to laze rare one in fifteen-thousand births.
or walk. But then, and again, so often in the
coming days, I felt a sharp pang of envy for Under pressure from organized parent
Dorothy’s supportive and loving husband, a groups, sometimes with funding raised by
fellow chemist at Kodak, even as she herself parents, given the constraints of govern-
felt the two of them lived “a fragmented ment funding for fundamental research,
life.” Even as I was forewarned, even about science is beginning to pick up the pace in
all the easily recognizable pitfalls, none autism research, into brain research, brain
of Dorothy’s well-mapped dragons would imaging, the sequencing of duplications
prove entirely avoidable. and deletions in parts of the genome es-
sential to neurological development, into
One solace I knew I shared with Dorothy, environmental exposures as triggers and
“Hard work is excellent therapy for a grief- into epigenetics–the study of changes in
stricken mind.” organisms caused by modifications of gene
expression rather than alteration of the ge-
Also, easily recognizable in our Ruffin netic code itself. Answers are beginning to
were the signs and symptoms that Dorothy emerge to Dorothy’s, Catherine’s, Bernie’s,
described in her Leo —aggression, pain and even my own early questions and spec-
insensitivity, initial suspicion of deafness– ulations.
which helped me put away any temptation
to run after a second, dissenting diagnostic Current thinking on the cause(s) of au-
opinion. tism — which likely varies at varying places
along the spectrum of this essentially be-
And, love was present, resonantly, in havioral syndrome — suggests there may
Dorothy, “But I think in our case the tragedy be various genetic susceptibilities, triggered
went even deeper. Leo was our only child by various epigenetic and/or environmental
and we had waited ten years for him.” insults. But none of this research or spec-
ulation into causation has helped much
So, love was not enough! Fair warning. yet—certainly not by leading to any easy or
effective non-behavioral treatments.
*
That there might some genetic link was
If a young child’s home environment didn’t strongly suggested early on by many pub-
cause autism, then what did? In 1994 I was lished twin studies, with which Dorothy was
intensely curious, of course. Even today, I familiar early as 1982, and were consistent
remain a curious reader. Can we help but with her own early research and solid ques-
be fascinated by our own children? tions,

Since the mid-1990s, an increasing inci- “Why is it predominately males, espe-
dence of diagnoses on the autism spectrum cially first-born males, who are afflicted
has been reported by the Centers for Dis- with autism or severe genetic disorders?
ease Control — now one in every fifty-nine
young children (more than one in every “Also, girls are far less likely to have se-
forty-two boys and more than one in every rious genetic defects than boys — although
one hundred and eighty-nine girls). Up

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later they never have all of the advantages thirty-seven; he, at forty-four. Recent re-
that men do in our present (1982) society.” search suggests some small risk of autism
with older fathers, as there has long been
Given the early reports of transient au- a known risk of Down syndrome with older
tism symptoms with heavy metal poisoning, mothers.
now confirmed by recent findings of high
residues in shed baby-teeth, given that But, did I have any time, or inclination, to
Kanner’s and Asperger’s classic papers on blame either Jim or myself? No, somehow
autism had their roots in Germany where I felt, urgently, we and Ruffin had very little
chemical industries had their birth in the time to get on top of our immediate prob-
1940s, I found Dorothy very prescient to be lems. And, certainly, none to waste on any
writing in 1982, inclination to blame.

“During graduate school I had worked *
with some very toxic chemicals which twen-
ty-five years later had been shown to cause So I was led by Dorothy’s, Catherine’s and
cancer and birth defects. Bernie’s examples to take a deeper dive
into the autism treatment and research
“How can psychiatrists ignore the fact literature than Ruffin’s pediatrician, his
that autistic-like conditions can be induced diagnostician, his neurologist, his speech-
in animals and man by trace amounts of and-language pathologist, his physical ther-
chemicals which have actually been found apist, his occupational therapist, his special
in the brains, blood and urine of mentally education teacher, his one-to-one, or one-
deranged patients? to-many teacher’s aide, his audiologist, his
vision therapist, his sensory integration
“Or, by surgical brain lesions? Or viral in- therapist, his pediatric special-needs den-
fections? tist, his school psychologist, and his state
autism consultant, because, together with
“My husband and I know there is a bio- Jim, or not, however that might work out, I
chemical or neurological defect responsible was Ruffin’s parent.
for causing autistic children to behave as
they do.” Each of these professionals and para-
professionals would just eventually return
Dorothy’s speculations caused me to Ruffin to us — maybe just to me–in the end.
wonder at the time. Jim was a combat veteran And I knew our public schools would turn
of the Vietnam War, a brown-water Navy man, Ruffin out into the world at age twenty-one,
heavily exposed to Agent Orange sprayed over when his IDEA special education services
his swift boat as it traveled widely through entitlement would end. Or earlier, at eigh-
the Mekong Delta, ferrying fresh platoons in, teen, should I foolishly consent to his high
ferrying survivors and corpses out. My preg- school graduation at that age.
nancy took place in rural Iowa, among corn
and soy bean fields of monocrops rendered And, fairly or unfairly, I felt I had no time
virtually weed-free by the then-heavy appli- to waste on uninformed professionals and
cations of chemical pesticides, running-off underpaid non-professionals who might,
into all the little streams, leaching into indi- as in Dorothy’s day, still compound what
vidual rural wells like my own. were our real difficulties with useless out-
rages.
And, as with Dorothy and her husband,
both Jim and I were older parents–I at

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By now, both common sense, as well as message of the 1960s, “It was not the pro-
the best published, peer-reviewed scientific fessionals who helped us (it was ourselves,
psychological research I had read about so together with other parents).”
far suggested that any treatment for autism
with any fair chance of success was bound In their day, through newspapers, snail
to take more than one hour a week of any mail letters and landlines, it was another
therapy. Here was Dorothy’s experience, autism-parent wrote to pass news of Bernie
and his efforts to Dorothy,
“After one year in therapy [one hour
a week of psychoanalysis!] Leo had not “Have you read Dr. Bernard Rimland’s
progressed beyond the level of an eigh- book, Infantile Autism? He has done all of
teen-month-old baby. Emotionally he was us parents a great service in that he col-
even younger, perhaps twelve months.” lected the world’s literature on autism and
synthesized it with clarity.”
Although, surprisingly enough, it also
seemed to take very little time for unin- True enough then, and it remained true
formed or sub-standard treatment to ingrain in 1994 for me throughout our time of need,
poor behaviors–which all too quickly became and on through 2006 the year of Bernie’s
self-rewarding to the child–and then, be- death, when Dr. Stephen Edelson and Ber-
came very difficult to un-teach or extinguish, nie’s long-time staffer Rebecca McKenney
and other organizations such as Dr. Do-
“The doctor did teach Leo one thing, how- reen Granpeesheh’s and Shannon Penrod’s
ever: to throw objects ‘to relieve his frustra- CARD Autism TV, fundraising organizations
tions.’ Until this time Leo had never been like Autism Speaks, and online daily world-
destructive in this manner and I doubt if he wide research reporting services such as
would be today. But thanks to psychoanalysis, Spectrum shouldered Bernie’s effort and
Leo has been permanently saddled with a very his great legacy.
destructive habit which serves no useful pur-
pose and has actually hindered his progress.” And, later, as I carefully re-read Dorothy
book I realized, here was her tragic, near-
Even today, a Medicaid-funded near-min- miss at effective treatment, possibly just
imum wage respite care worker or sitter or the result of the misspelling of a name in
teacher or teacher’s aide untrained or un- that same earlier parent’s letter to her, a
skilled in good behavioral practice might do misspelling which must also have escaped
a young child with autism more harm than Dorothy’s own copy editor.
good, and might amount to less quality
care than Dorothy’s 1960s-era solution of “Operant conditioning seems to have the
seeking help from the Society for Preven- most promise in teaching autistic children.
tion of Cruelty to Children in order to hire a Dr. Loovas from UCLA is one of the major
full-time licensed practical nurse to care for proponents of this technique.”
Leo during his first five years while he was
able to continue to live at home. From Schopler’s series of volumes, I
knew Lovaas was the correct spelling, Ole
* Ivar Lovaas, PhD, his full name and true title,
his name itself Norwegian, as he was. In a
Throughout this early period, I kept close September-October 1994 issue of The Ad-
to my heart Bernie’s and Dorothy’s abiding vocate, the newsletter of the Autism Society

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of America, Dr. Lovaas reflected on his work the country, in New York, Dorothy learned
as a teenaged farm laborer under the Nazi a bit of his work, but had her initial reser-
occupation of Norway, vations,

“I first became interested in psychology “Our first [parent] meeting was to include
during the German occupation of Norway a movie dealing with the technique of op-
— the country where I grew up — during erant conditioning, also called reinforce-
World War II. I was a boy then, and I won- ment therapy or behavior modification.
dered whether such destructive actions
were caused by genetics or by the environ- “But operant conditioning is not a cure-all,
ment. I hoped for the latter, because that unfortunately. It is only one of many prom-
would be easier to change. So you could say ising techniques for helping a nonverbal
that my own childhood environment deter- child begin speaking and communicating.”
mined my eventual interest in the behav-
ioral treatment of children with autism. Then, recounting her own personal ex-
perience, she noted about her Leo,
“Nazi Germany shows us the critical
importance of the environment to be- “He ‘learned’ the words very fast when
havior. Here was the German culture, a gumdrops or jelly beans were the reward for
culture that had done more to reward art getting the right answers.”
and science than any other European na-
tion, and yet it perpetrated some of the Essentially, that was operant conditioning.
most savage acts of slaughter in history. A
normal person can be highly affectionate By her book’s end, Dorothy offered this
in one environment, terribly destructive in wise and generous recommendation for the
another.” future, long after her time of immediate
need, when, as a practical matter, the full
Ole Ivar Lovaas had come to the United developments of Lovaas’s techniques had
States first as college undergraduate ex- never been available in time for Leo,
change student to study music, in the 1950s.
He had come to Luther College, where, I “Research into educational and behav-
myself taught creative writing, briefly as ioral techniques like operant conditioning
an adjunct, to an area where immigrant has demonstrated that even the most ‘hope-
Norwegians had settled, where Norwe- less’ child can learn. More teachers must
gian-Americans still lived, to the home of be trained in this field, perhaps in courses
the Norwegian-American Museum, in Dec- sponsored by the federal government.”
orah, Iowa, where I had practiced my first
ten years as a lawyer, where Norwegian was The only place Dorothy mentioned where
still spoken in the Social Security Office, and Lovaas’s technique was available in the early
still a twenty short miles from where Ruffin 1980s was in California — solely through the
and I lived in Waukon. agency of Catholic charity.

Eventually Lovaas had settled into a long * Operant conditioning was a phrase I re-
and controversial career of psychological called from my own undergraduate days
laboratory research into autism at the Uni- at Reed College and associated with
versity of California at Los Angeles. Across on-campus debates about B.F. Skinner
raising his own children in his Skinner
boxes.

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After a single semester, I had moved out to delay the issuance of faculty paychecks,
of my noisy Reed College freshman dorm, for maximum effect. Still, most of the
into the quiet, dark basement of Mrs. Lump- younger, untenured faculty were in sup-
kin’s tidy, suburban, Eastmoreland home. A port of the closing. Which did not really last
new widow, she could use the money. I, too, that long, anyway. After a lengthy debate,
would save quite a bit by giving up my room student-leaders bent to the graduating
and board contract on campus — my dis- psychology students’ demand that the pro-
tant view of Mt. Hood–to rent from her. All tests not disrupt the Skinner-box rat-maze
my savings from my living allowance could experiments running in the basement. No
go for new books, from the campus book one wanted to set back behavioral research.
store — and from the larger Powell’s Books About forty percent of the Reed class just
downtown — I had no car, but there was a ahead of me dropped out to pursue more
horribly slow city bus. effective political protest.

Mrs. Lumpkin’s husband had been an That summer, May through August of
accountant, I think. All his things had been 1973, I returned to my state boarding school,
moved down to the basement. Where I was. the School of the Arts in Winston-Salem, to
Out of sight. Out of mind. I supposed. Al- monitor the stained glass studio for summer
though she seemed sad enough, and some- students, to make a little money, keep a bit
times talked about him. of distance from my family, keep a bit of
freedom. Cutting glass and soldering soft
He seemed to have loved fountain pens. lead with the windows open to vent the
He certainly had some beautiful ones. Partic- acrid smoke, all summer I listened, fasci-
ularly, a green one, with a striped barrel, in nated, to the ongoing Senate Watergate
two shades of green. This was the one I chose hearings. Admiring Sam Ervin, our elephan-
to steal when I moved home for the summer. tine Senator. Glimpsing the young wom-
This was the one I brought with me, which en-staffers like Jill Wine and Hillary Rodham
I considered my own by then — the one I who were investigating attorneys. Perhaps
began to write poetry with, when I moved ungraciously, I decided to avoid any more of
back in the next fall, as her faithful tenant. Mrs. Lumpkin.

Mrs. Lumpkin was a Republican, a strong My last two years at Reed I rented
supporter of President Nixon. She wor- another room the size of a coffin. In an
ried for him, and for our country. That fall attic, without heat. I slept under, actually
and winter of 1972-73, I sat and drank a wrapped up in my long, second-hand army
little coffee with her, and listened politely, overcoat. Between two cedar bookshelves,
keeping my own opinions to myself. Reed lined with my insulating books. Under an
itself was rife with war protests, which left uninsulated cedar roof. Since the college
me nearly-equally uneasy, feeling politely library was open all night, often, whenever
again, I must be on the wrong side of the it was very cold, or rainy, I sat up late there,
issue. After all, I had loved writing local sol- drinking coffee. It was a thoroughly civilized
diers serving in Vietnam all through junior library. And, once the infirmary was likely
high and high school, offering my self-ab- as filled up as it would be for the night with
sorbed support. the sick, I could wander over there, and the
nurses would take me in if there were still a
The campus protest to close down the
Administration Building had been timed

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free bed. The infirmary, too, was thoroughly Marc had managed to come to a reasonable
civilized, had a hot shower, and a large bran- treatment decision for their two children,
dy-snifter full of foiled condoms.
“Marc and I heard it all, and we heard it
* constantly: We heard that we were going
to create a robot child . . . that behavior
Lovaas’s early research was not without modification stopped just short of child
controversy, however, resulting from his abuse . . . the erroneous assumption that
early use of aversives. Fearlessly, effective- every behavioral program systematically
ly, and perhaps crudely, at times, and for uses a whole gamut of horrific aversives —
the most part uncommonly, for patients everything from spanking to electric shocks
in extremis, in the late 1950s Lovaas had to stun guns. In our home program, how-
used electric shock to treat those devel- ever, no therapist ever used any physical
opmentally disabled children and adults aversive. The most restraining thing we did
who engaged in extreme self-injury such was to keep Anne-Marie in the chair when
as eye gouging, ear-drum piercing, and she would rather have crumpled to the floor,
head-banging, and who through such in- although some people would consider that
jury ran the greater risks of secondary, very aversive indeed.
and sometimes deadly infections. Such
highly-developed self-stimulatory behav- “After all, the sessions were going to be in
ior—self-injurious behavior—had put their our home. Surely we could have some con-
parents to harder choices than I felt I ever trol over what went on under our own roof.”
faced, having caught Ruffin’s autism early
before these extreme behaviors developed. Aversive practices came to be largely
abandoned by Lovaas and later behav-
Catherine had written about how she iorists as they developed the technique
and her husband Marc wrestled with the of extinction, a disciplined, and strictly
concept of aversives, acknowledging both objective practice that attention be given
its value in some cases, and their personal rewardingly by the therapist and/or par-
distaste for the practice, and their unwill- ents and caregivers when, and only when,
ingness to cross certain lines during treat- a disabled child or adult was — momen-
ment to be carried out in their own home, tarily or accidentally at first–not engaging
in self-injury. Undue attention given to
“Not that we are categorically against an unwanted behavior ran the risk of in-
aversives . . . .We have heard of some devas- creasing the occurrence of unwanted be-
tating cases where a child’s self-injurious be- havior. Everything, everything seemed to
havior was so severe as to threaten his sight, be a behavior, to be watched, encouraged
his hearing, or even his life . . . whose par- and rewarded if good, and ignored and ex-
ents finally acquired a device, a helmet that tinguished if bad.
delivered a mild electric shock every time
the child attempted to hit himself. The be- In making my own decisions for Ruffin’s
havior was eradicated in a matter of weeks . treatment, I considered, too, how clear it
. . . Neither one of us liked it . . . . His mother was that without being able to learn, Doro-
had no doubt she had done the right thing.” thy’s Leo remained permanently subject to
other, severe risks common to children with
Despite the noise and unpleasantness untreated autism.
around this issue of aversives, she and

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“Unable to learn to use his seat belt, Leo for a real search for triggers–the immediate
jumped out a moving car.” environmental precursors to unwanted be-
havior–can be changed. This sort of change
“Leo has never learned what danger can be hard to secure within educational
means... One winter when Leo was away systems. It is probably easier to achieve at
at [his residential] school, I received a call home where changes are within parental
from one of the staff saying that Leo had control.
been hit by a car when crossing the street
from the dining hall to his home unit . . . . And, while the IDEA and other federal
His shoulder bone had been broken.” and state law now provide that schools must
write behavior intervention plans ahead of
The injury of a disabled child while anticipated times of crisis, hopefully with
placed in care — living away from home and the assistance of an observant and experi-
from ready parental oversight of necessity– enced certified behavior analyst, it remains
is not an uncommon event, even today. up to parents to remove their children from
inappropriate educational placements, to
Dorothy had found it difficult, as I did, as insist the law be observed, and to enforce
most parents do, to think of disciplining a it in the courts, if necessary.
child with disabilities, whom we may sus-
pect has no real grasp of the concept of pun- *
ishment, whether intellectually or morally.
Still, at desperate junctures, Dorothy herself It seemed my own parental urge to read
reported the effective use by herself and her and research past midnight was a common
husband of what some might consider aver- enough reaction. Or affliction. I found Cath-
sive practices in parenting Leo–spanking, erine, as she described Marc’s and her own
and cutting off the electricity to his room to desperate reading after their Anne-Marie’s
put an end to Leo’s staying up all night. diagnosis.

At desperate junctures, in desperate “More and more, we read — books, arti-
spaces, today’s untrained caregivers, even cles, anything that we could get our hands
today’s trained special education teachers on. By now we knew better than to expect
and classroom aides continue to engage in to find some magic cure . . . I raced through
what amounts to punishment of the dis- texts . . . anecdotal accounts . . . the ‘co-
abled. Unfortunately, in many states, such ping’ books . . . the ‘descriptive’ books . . .
child abuse by an unsupported teacher all spelled hopelessness and resignation
or untrained aide is not reportable to the . . . One of the books was entitled Autism,
state Department of Human Services, but, Nightmare Without End.”
remains a matter for in-house discipline, if
any, within the school district’s personnel So, Catherine, as I had done, had read
management system, generally an opaque Dorothy.
and protected professional bailiwick.
“In all the literature [through 1982] there
Aversives have no place in the punish- are only a few cases of what Dr. Rimland
ment of a child who tantrums disruptively or calls true cases of autism who have recov-
otherwise misbehaves in school. Time and ered almost completely.”
data need to be taken for thoughtful anal-
ysis of the function of the child’s behavior, This was not encouraging, but this was
why I was reading and searching. I found

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myself reading Dorothy differently from One-to-one (one student addressed by a
Catherine, perhaps. In me, Dorothy’s story single therapist) direct instruction, forty
inspired panic. Appropriate panic. hours per week for two years between ages
two to five years. In practice, one-to-one
And, of course, I had the good fortune instruction was delivered by a rotating
to have Catherine to read afterward. Cath- team of therapists, each working in about
erine laid out a true template for hope in Let forty minute sessions, because providing
Me Hear Your Voice, her engaging, personal the instruction itself was exceptionally de-
and warm 1993 account of the “recovery” manding and rigorous, and required careful
of two of her children, a girl and a boy, data collection while interacting with the
both, from autism by treatment organized child. Of course, of everyone involved, the
in her home, using intensive, early Applied child ended up working the longest and
Behavioral Analysis (ABA) developed by Dr. hardest. Lovaas’s follow-up 1993 published
O. Ivar Lovaas at UCLA, and documented in research outcomes for his recovered group
his 1987 and 1993 scientific peer-reviewed looked like the kind of results I was willing
publications. to gamble for–normal IQ, mainstream
schooling and socially indistinguishable be-
When I read Catherine’s words, havior from peers by age thirteen.

“Almost half (nine of nineteen) of the *
children in the experimental [Lovaas] pro-
gram had achieved “normal cognitive func- Scientific progress over time ought to play
tioning.” . . . the children were now in their a role in what we expect those drawn to ca-
teens... they had indeed become indistin- reers of helping young children with autism
guishable from their peers, socially as well to know. Dorothy’s 1982 book of nightmare
as cognitively . . .” was published five years before Lovaas’s
1987 peer-reviewed publication of the ac-
How those words leapt off the page for cumulated results of his early years of re-
me! search–when he finally began to recover
very young children with autism. Cather-
And Lovaas himself explained his work ine’s 1993 template of hope was published
to the lay reader of Catherine’s book in his six years after Lovaas’s seminal publication.
Afterword,
Dorothy wrote fully a dozen years be-
“According to our data forty-seven per- fore Lovaas’s 1993 publication of the lon-
cent of the autistic children we treated gitudinal results of his re-investigating and
before the age of three and a half attained independent third-party re-testing of his
normal intellectual functioning and passed first recovered group. Catherine enjoyed
first grade in a normal school by the age of the advantage of writing her account just a
seven. Recent follow-up data, taken when year before this confirming 1993 follow-up
the children we treated averaged thirteen study, with Lovaas himself foreshadowing
years of age, showed that their treatment these long-term results then in press in his
gains were maintained and that their cogni- Afterword to her book.
tive, emotional, and social functioning still
appeared normalized.” Both these books and all Lovaas’s
peer-reviewed studies were available to me,
Essentially, Lovaas’s 1987 prescription
for successful treatment of autism was:

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as I struggled to make my treatment deci- normal functioning and go on to succeed
sions for Ruffin in 1994. in regular education without assistance,
forty-three percent could make significant
Throughout the mid-1990s, and espe- progress but continued to demonstrate lan-
cially after the publication of Catherine’s guage delays, and, sadly, ten percent would
1993 book, parents like me all around the make little to no progress.
country and all around the world began
trying to mount programs of early intensive When the U.S. Surgeon General then is-
applied behavior analysis (ABA) treatment sued opinions supportive of early intensive
and instruction, with each family making ABA these continued to fall on deaf ears.
determined, often isolated efforts to trans- Professional educators don’t subscribe to
late Lovaas’s published laboratory research the opinions of the U.S. Surgeon General
into our homes, using Catherine’s model. either. Not when they already have their
own established literature, customs, best
These were isolated, fragile family ef- practices, and comfortably-accepted con-
forts, because special educators or state straints, as well as national organizations
departments of education were unlikely of school district defense counsel ready to
to read, much less take to heart, peer-re- charge them hundreds of dollars per hour
viewed scientific literature written in ac- to defend their comfort zones.
ademia. Surprisingly, to those of us, just
naïve parents wandering into these embat- Now that the early lack-of-replication
tled arenas, research psychologists did not argument has become groundless, and
publish to school psychologists — the two the U.S. Surgeon General has weighed
psychological disciplines and literatures did in, I firmly believe the time has long since
not communicate with each other — they passed for school districts to be making ar-
represented solidly separate silos of disci- guments against intensive, early interven-
pline and effort. tion for young children with autism. School
districts simply need to get cracking.
From 1993 and on into the following de-
cade, controversies about Lovaas shifted to It seems to me that future behavioral
arguments about whether other researchers and educational research into autism ought
or behavioral practitioners would ever be to be focused on:
able to reproduce Lovaas’s claimed, long-
term results. School districts facing parental 1. How to reach the ten percent who
demands for more effective special educa- make little to no progress, or
tion practices in autism, and reckoning up
the costs of these parental demands, re- 1. On why this may be so, or
mained quick to seize upon lack of published
replication by other researchers as a reason 2. Why this may remain intractable.
it would be “inappropriate” for parents to
ask public schools to offer a Lovaas program 3. And how, if at all, to distinguish the
of instruction to their children. outcome sub-groups in advance of treat-
ment and intensive special education (es-
But, by 2005, Lovaas’s results were repli- sentially a triage function).
cated, and again showed–approximately for-
ty-seven percent of children could achieve As Catherine reported in 1993,

“There seem to be no ‘markers’ indi-
cating which children have the capacity to

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recover and which do not . . . . Dr. Lovaas to remain in translating treatment proto-
had published when our children started cols from behavioral laboratories into family
therapy show that, at best, only about half homes, into public schools and into the
the children receiving this kind of therapy wider care-giving worlds of group homes,
at this level of intensity at this young an job-coaching and sheltered workshops.
age reach ‘normal cognitive functioning.’
So much seems to depend on the child’s As always, as ever, it falls first to parents
capacity to respond. So much depends on to make good, better and best judgments
how severe his condition is, how early he for their children, based upon the accumu-
is diagnosed.” lating weight of the scientific evidence and
of peer-reviewed research.
Now, researchers like Dr. Deborah Fein
are beginning to survey the peer-reviewed *
published literature to try to do this.
More recently, even the aim of ABA Lovaas
Although, from a parental perspective, recovery is being questioned by articu-
like my own —and even from the public late self-advocates with autism like Mi-
schools’ and state mental health depart- chelle Dawson or Ari N’eman, the speak-
ments’ long-term perspective — whether ing, writing, communicating advocates of
simply because it would only be humane, or neurodiversity. These new neurodiversity
whether strategically focused on addressing advocates may protest the efforts of any-
the exploding public cost of special edu- one–even their loving parents–to repress
cation and lifetime care for children with or mold their burgeoning personalities into
autism who make little progress toward any narrowing conception of the normal
learning and self-sufficiency — why does it or the neurotypical. While I firmly believe
not seem “appropriate” to offer each child every recovered and/or able child with any
with a new autism spectrum diagnosis an remaining residua of autism needs to learn
early, intensive trial intervention to probe how to become an effective self-advocate
for whether a robust or even significantly for him or herself, and for their confined
good response might arise in an individual and unconfined, unspeaking cohorts, some
child? of this more recent neurodiversity advo-
cacy does strike my ear as a near-echo of
I believe the reason this does not the early anti-behaviorists so firmly taken
happen is because it is hard and tedious down by Catherine in her Chapter 33,
work to mount an effective, intensive early
intervention, and because in the scientific “Within the framework of this accep-
literature, as with legal precedent, if you tance-respect-understanding approach, be-
look long enough from a decided or self-in- havior modification, which insists precisely
terested position for some support to cite on imposing many demands on the child
among contending authorities, it is certain — insists on changing him — is universally
there will always be some to find. despised. Parents who resort to it are cas-
tigated as manipulating the child for their
All this adds up to a sad commentary on own ‘convenience.’”
the slow advance of effective autism treat-
ment and advocacy. I believe the greatest Though some of the neurodiversity advo-
challenges to addressing autism continue cacy movement seems wonderfully vibrant

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and hopeful, I do not see it as terribly The Appendix includes Catherine’s brief
helpful to parents at the point of decision, descriptions of several available blind alleys
because intensive, early ABA intervention I decided to avoid wandering down. About
may be ineffective in reaching “recovery” or all these largely-worthless and harmful
“best outcome” unless it begins well before group of fashionable flavor-of-the-month
sixty months or five years of age magical-thinking easy autism therapies, I
found I agreed with Catherine’s firm judg-
Our Ruffin, at three and a half years old, ments of dismissal.
just diagnosed with autism, without speech
or other meaningful communication or crit- “Moreover, and most distressingly, they
ical judgment was unlikely to be able to encourage parents to focus on the one mir-
advise Jim and me how to raise or educate acle method, discouraging them from per-
him. How wonderful, if he should grow severing with the hard, relentless, boring,
not only to love us in his childhood years stressful regime of a behavioral approach.”
of latency, but also grow in later years to
resent us, even break with us, as is typical *
in adolescence, and go on to establish both
distance and independence from us in his Catherine’s extended expose of the ther-
adulthood. apeutic field was distressing enough to
read, much less encounter when seeking
* out help for Ruffin, but as Bernie advised,
and despite the paralyzing effects of first
Catherine’s book is now over twenty-five diagnosis, I believed it remained critical for
years old and remains a sound template for me to try to follow Catherine’s example, to
who find themselves faced with choosing “take an active, aggressive role in seeking
treatment. As Bernie wrote in his Forward, and trying the various treatment modali-
ties that others have found helpful.”
“Her Chapter 33, a brilliant analysis and
expose of the therapeutic field, should be Re-reading her book, I came to value
required reading for parents and profes- Catherine’s pragmatism — her desperate,
sionals alike.” initial willingness to try a lot of things at
once–and then critically judge along the
For me, her Chapter 33 stood as a de- way what seemed to be working for each
finitive, common sense take-down of the of her children. Because of her honest as-
anti-behaviorists, sessment of her own experiences with a
combination therapy program, in 1994, I
“Who are these antibehaviorists . . . . they was able to choose more wisely and confi-
are the proponents of the various psycho- dently what other available therapies I was
dynamic approaches: holding therapy, the willing to combine with a core ABA/Lovaas
Option Process, most therapeutic nurseries, program without disrupting or endangering
and play therapy . . . . I am thinking of one what might be its crucial effectiveness.
mother who told me: ‘I did behavior modi-
fication. I punished my daughter when she I took to heart the conclusion of Cath-
acted inappropriately!’ That, I believe, is erine’s successful experience and her wider
analogous to claiming to have ‘done’ France acquaintance,
because you stayed overnight at Charles De
Gaulle Airport.” “Again, the only scientifically documented,
published study (based on statistical

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analysis rather than anecdote) that shows permit her to learn the skills she needed to
any autistic children to have recovered adapt to her environment.”
supports intensive behavioral intervention
at an early age. Even then, the majority of Catherine and Marc had considered the
children do not fully recover. As one father matter this way, which resonated with me,
who was running a home program for his knowing what I knew about Ruffin’s MRI
son once said to me: ‘There’s maintenance, results,
and then there’s Lovaas. There are holding
tanks, and then there’s behavior modifica- “Somewhere, somehow, he [Marc]
tion.’” thought, there was neurological damage.
But we were helping Anne-Marie to over-
Sometimes, too, I knew history teaches. ride that damage, or to compensate for it,
So, I highlighted some important treatment through external stimulation . . . . Someday
and advocacy history in Bernie’s Forward to someone will figure out what is going on
Catherine’s book, neurologically . . . . I’m convinced that the
continuing resistance displayed by some
“I was so impressed with the potential of parents toward the idea of a genetic or
behavior modification that [in 1965, with O. other organic cause of autism has to do
Ivar Lovaas, PhD] I founded a national par- with their despairing conclusion that if it is
ents organization (now the Autism Society indeed a biochemical or metabolic disorder,
of America with nearly two hundred local they may as well throw in the towel because
chapters) in order to bring this approach there is nothing that can be done about it.”
to public attention quickly and to provide a
means for disseminating detailed informa- *
tion about it.”
And, here I found Catherine, impatient then,
Again, in his Forward to Catherine’s book, as we all were and are for more research,
Bernie had singled out Lovaas’s approach as
the one of then-greatest promise, “I like the fact that people (for example,
Eric Courchesne, Ph.D.) are using MRI scans .
“The one approach which appears to . . . other people discovered a fragile X chro-
have been most effective in bringing about mosome . . . .anything that would bring the
recovery in the Maurice children is the cool light of reason and science to bear on
teaching procedure known as behavior all this mystery . . . . I couldn’t wait for the
modification . . . . this simple-appearing day when we had some more answers. I
technique not only helped autistic children, was surprised as the vehemence in my own
it helped them a lot.” voice. I hadn’t realized what a tidal wave of
impatience was growing inside me. I was
And it was not without an intriguing angry.”
precedent in disability education,
Research today — PET and CAT scans
“‘It’s amazing,’ Dr. Lovaas told [Bernie]. show how “recovered” or “best outcome”
‘All these years we’ve known how well it children’s brains process language differ-
worked for Helen Keller, but no one thought ently. But they do speak and process lan-
to try it on autistic children.’ . . . Behavior guage. Better than not speaking. Better
modification did not restore sight and than not understanding what is spoken to
hearing to Helen Keller — her biological them.
handicaps remained with her — but it did

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* old, and not to contain nearly enough in-
formation to translate Lovaas’s academic
By early September, 1994, I had read research results into our home. But they
enough to hope that Ruffin’s provisional di- were helpful to me as an emerging behav-
agnosis of Pervasive Developmental Disor- iorist, and helpful later as I came to recruit
der was encouraging, similar enough to the my home treatment team.
variably-worded diagnoses for Michel and
Anne-Marie Maurice, Catherine and Marc Later on, as it was published mid-way
Maurice’s young son and daughter — who through Ruffin’s treatment, I was able to
recovered. And, by then I shared Bernie’s, order Behavioral Intervention for Young
Dorothy’s, Catherine’s and Marc’s sense of Children with Autism: A Manual for Par-
urgency about letting no time lapse before ents and Professionals, by Catherine Mau-
intensive treatment began. For me reading rice, Gina Green and Stephen C. Luce from
the 1987 Lovaas article, and reading about Pro-Ed:
it in Catherine’s book, began to meet the
appropriate panic inspired by reading Dor- https://www.proedinc.com/Products/7816/
othy’s book and buttressed my hope. behavioral-intervention-for-young-chil-
dren-with-autism-a-manual-for-par-
This was what I wanted to do! ents-and-professionals.asp. Or, as in 1994,
from Pro-Ed, 8700 Shoal Creek Boulevard,
And, like Catherine, I did not need Austin, TX 78758-6897, Tel. (512) 451-3246,
anyone, not my parents, not Rose, not even Fax. (512) 451-8542.
Jim, to detour me into any peripheral topics,
such as how I might need to take care of At first, Catherine and Marc had admitted
myself and give thought my own needs. Or to these feelings, “. . . on the face of it, the
Jim’s. Warned by Dorothy, I believed autism idea [of Lovaas ABA] was nothing short of
could get to be a serious, lifelong problem appalling to us . . . . images of Pavlov’s dogs,
for Ruffin and for me and all of us, so I had trained seals, rats in mazes.” Early on, too, I
better get going because I had a lot of work found this was a feeling I shared.
in front of me. And, after reading Bernie,
Dorothy, Catherine and Lovaas himself, like Worse
Catherine, all my naïve expectations of pro-
fessional help fell quickly by the wayside. This is training our loved and long-awaited child
Like a seal
*
–better by half, with less than
But, how was I going do this? Using infor- Half a chance, than the alternatives —
mation in Catherine’s book, I ordered a set
of early Lovaas instructional videotapes, Also researched:
and The Me Book, Lovaas own early man-
ual of behavioral treatment. Catherine The black-and-white,
warned that she and Marc found these Awful documentaries — worse
particular Lovaas “books and tapes . . . an- Than six-year-old, precocious
other story. We hated them. We hated the Elizabeth Bishop’s
way the children looked, so somber-faced
and wooden . . . . We were revolted.” My
own reaction was these materials seemed

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February, Nineteen-Eighteen to document his son’s failure in special ed-
National Geographic: ucation and to show the necessary contrast
of his son’s success in a home-based Lovaas
A boy with his hands padded in bandages, program in order to make a successful bid
Harmlessly battering his helmeted head for school board funding. Of course, this
In care; spoke exactly to my own nagging concerns,
and offered a good suggestion toward
Or the unsocial male and female finding a funding solution for Ruffin. This
Teens, seated on a common bench was particularly true since the Handicapped
In summer, oblivious to each other, Infants and Toddlers Program (Part H of the
In their large, unlovely adult bodies — IDEA) had just added “autism” as a spe-
Gazes averted from each other, cially recognized disability in the 1990 IDEA
And from the relentless cameras; amendments.

Or the starched-faced toddler In Catherine’s appendix I also found
First tracing sun-motes in her palm, other good tips in Lynn Adams’ story on
Making an identical gesture — in super- how to choose people to train as home
Imposition — years later — behavioral therapists, whom to reach out
No change in her behavior, her solitary to within academia, how to find excellent
Leisure in her thirties, in the quiet or noisy, advocacy and legal expertise, and how to
Clean or filthy State Hospital — begin eventual integration or inclusion of
Court-ordered to be no more of... Ruffin with kindergarteners,

Or the young man later busy looping yarn “Dr. Lovaas’s clinical supervisor, who
To hook in canvas, seated on the common sofa would later conduct our workshops, ex-
At his group home — the ones there are plained the criteria for a therapist . . .
So few of. should not necessarily be an educational
background, but a willingness and ability to
* learn behavioral methods . . . . We made
contact with a professor of psychology at
After writing the body of her book, Cath- our local community college, and he was
erine had appended some abbreviated ac- very enthusiastic about helping us . . . . our
counts of other ABA delivery and funding money, even our borrowing power, would
models that were beginning to develop in soon end . . . . We stood our ground and told
the early 1990s, the school administrator this (an ECSE with
eleven handicapped students served by a
“The other recourse (beyond health in- teacher) was inappropriate for our child.
surance coverage which Marc and Catherine . . . We located a local advocacy group . . .
had used) is to convince the local school dis- a great help to us, and all parents should
trict that the child needs this therapy, and check to see if there is a similar group avail-
that the district should provide it under the able in their area . . . . We were offered thirty
EHA (now the IDEA).” hours per week of one-to-one behavior
modification therapy, two and a half hours
Specifically, Catherine told the story of per week of speech therapy and structured
Grant James who had used a video camera peer modeling using kindergarten children

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specially chosen for this program. We also you swim, you will deal with me,’ whispers
have biweekly meetings to revise and up- the voice of catastrophe. ‘Whether you
date our child’s program. He is now in the want me or whether you don’t, I am here,
hands of competent, caring professionals, forever. You are impotent to change me. I
receiving the ‘free and appropriate educa- will change you.’”
tion’ to which he is entitled.”
A great measure of Catherine’s deter-
* mination came from the support she was
able to draw from her strong, Catholic faith,
What about the remaining ten percent from her settled marriage to an investment
risk of no recovery when weighed against banker, from her large extended family, her
the high cost of effort? Here Catherine ac- mother, her three sisters who were lawyers,
knowledged, as well, her own deep sadness and their families of husbands and children.
for families whose children failed to make Still, I identified strongly with that part of
either meaningful improvement or full re- Catherine she described as having “an impa-
covery, including Lucille Schoales’s story, tience born of despair . . . a woman like me
— intellectually oriented, impatient, com-
“Even though we sacrificed everything petitive, overly sensitive to criticism or dis-
we had, we knew it was our only chance approval” with zero focus on—“how I was
. . . . The following year was a financial di- coping. . .” Irreligious as I was, momentarily,
saster . . . . When we first moved here [to now and then, I felt my own isolation in this
be close to The Alpine Learning Group, a small Iowa town — keenly — where as a solo
private ABA provider] we hoped that Mike legal practitioner, I found myself the keeper
would recover from autism, but he did not. of too many confidences and secrets — both
His deficits in receptive and expressive lan- those of my clients, and my own.
guage are severe . . .”
So, it was not for me to turn God, but to
This story left me to ponder Catherine’s Jack Gilbert’s great poem with its argument,
final reflection, echoed as it was in some of Catherine’s
words — written as her Annie-Marie was
“Although I have encountered much quiet “difficult to calm or distract . . . one of those
heroism in the world of autism, Lucille Scho- times . . . when you just have to hold on until
ales’s story still always moves me to tears.” it’s over — [h]old on to the conviction, if not
exactly the comfort, that there is undoubt-
On balance, even weighing in the possi- edly greater suffering going on somewhere
bility of the worst possible outcome, Cath- in the world.” And perhaps I was drawn, too,
erine’s account heartened me, not only by Gilbert’s title, with its superficial and
with its double outcomes of recovery for ironic nod to my own profession.
both Anne-Marie and Michel, and all the
other brief, appended accounts, but also A Brief For The Defense
with the example of her determination to
break a pathway through what seemed to Sorrow everywhere. Slaughter
me to be a familiar, surrounding wilderness, everywhere. If babies
are not starving someplace, they are starving
“This cry is our old habit of mind. We
think we have some control, even as the im-
passive, impossible truth sits staring malev-
olently at us. ‘Whether you sink or whether

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somewhere else. With flies in their nostrils. *
But we enjoy our lives because
that’s what God wants. September 1st: I wrote Marcia to return the
Otherwise the mornings before materials she had provided about whom to
summer dawn would not contact to establish an estate plan for Ruf-
be made so fine. The Bengal tiger would not fin’s long-term, lifetime care as a person
be fashioned so miraculously with an incurable disability, unlikely to be
well. The poor women able ever to handle his own finances or to
at the fountain are laughing together between care for himself after I was gone. This fair-
the suffering they have known ly reflected the educators’ expectations for
and the awfulness Ruffin, I supposed. Nevertheless, I wrote
in their future, smiling and that Ruffin seemed to love school, and
laughing while somebody thanked them for all their help and for re-
in the village is very sick. There is laughter sponding so quickly.
every day in the terrible streets of Calcutta,
and the women laugh in the cages of Bombay. Soberly and methodically, the same day,
If we deny our happiness, resist our satisfaction, I had reached the crowning entry in the
we lessen the importance of their deprivation. final back pages of my autism resources:
We must risk delight. We can The Catalog of Catalogs. If you had a child
do without pleasure, with autism in the 1990s, it seemed this
but not delight. Not enjoyment. We must have was how you shopped when you couldn’t
the stubbornness to accept our seem to ever get out the door! When you
gladness in the ruthless couldn’t get in and out of a store without a
furnace of this world. To make meltdown! When you really needed shoe-
injustice the only strings or bottles or new rubber nipples or
measure of our attention is to praise the Devil. diaper-pins! Or even a new pair of heels
If the locomotive of the Lord runs us down, for court! With a full collection of catalogs,
we should give thanks that the everything, I suddenly saw, everything was
end had magnitude. available by mail-order!
We must admit there will be
music despite everything. Now, I suppose, it would be online.
We stand at the prow again of a small ship
anchored late at night in the tiny port In either case, no need to ever leave my
looking over to the sleeping house any more than to step out onto the
island: the waterfront porch.
is three shuttered cafés and
one naked light burning. Perfect! I ordered it, The Catalog of Cat-
To hear the faint sound of oars in alogs. So I could order myself a full collec-
the silence as a rowboat tion of mail order catalogs. No, Sears was
comes slowly out and then not enough!
goes back is truly worth
all the years of sorrow that are to come. I found myself laughing.

My first deep, unguarded laugh since
Ruffin’s diagnosis.

Same day, a busy day, a Thursday, the
schools sent me my thin pink carbon copy
of Ruffin’s August 25th IEP, less its missing

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first page. Marcia let me know that Terri received the Lovaas tapes and she would
Kleinow, the speech and language patholo- like someone to help her apply those prin-
gist Keystone had assigned to deliver speech ciples. All September looks good for her ex-
therapy to Ruffin “had me restate objective cept September 8th. Here is ECSE Teacher
three for the expressive language goal. She Pat Novak’s class schedule — just give a
wanted it to reflect her belief that Ruffin couple days’ notice. Fridays they will be
would be using more complex sentence going to Luther College for swimming and
structures than just adjective-noun-verb adaptive physical education. Phyllis has the
combinations.” referral form and should be typing it up and
giving it to you! Thank you, Marcia.”
Of course, this represented a change in
Ruffin’s IEP made without prior notice to Her typed referral form was a bit more
me as his parent, and without my input, as cautiously worded for the record,
required by federal law under the IDEA’s
procedural rules of due process. But, hey, “Ruffin has a provisional diagnosis of PDD
it raised the educators’ expectations for (Pervasive Developmental Disorder). The
Ruffin. No harm, no foul. Perhaps. Perhaps, team wants to ensure that Ruffin’s initial
it was just a result of Terri’s misfortunate ab- programming is meeting his social and ex-
sence at both our summertime August 1st pressive language needs. Ruffin attends an
evaluation and our August 25th IEP meeting. ECSE class five days a week. Parent is very
involved and interested in learning more
As for my request for Keystone’s finan- about Autism/PDD. The mother would like
cial contribution toward the cost of the up- assistance applying some of the language/
coming Autism Clinic at Gundersen, Marcia play strategies she has been reading about.
assured me she was on top of it, Please meet with the mother and classroom
teacher. Transitions to and from community
“I wanted you to know that the request settings have been difficult. Can the Autism
for further testing has been sent to Director Resource Team assist with addressing these
Pratt. He will review the August 1st staffing issues?”
report by Keystone evaluators and forward
it to Gundersen’s patient coordinator for No mention, of course, of any receptive
the Autism Clinic.” language concerns, since the educators had
left that matter unaddressed in Ruffin’s IEP.
Busy, busy day, for Marcia. As a result of No concern expressed that Ruffin failed to
my permission to refer Ruffin, which I gave fall within the autism spectrum. And, of
her readily enough, both over the phone, course, “language/play strategies” was
and by coming in to sign a formal written hardly an accurate description of the inten-
release of Ruffin’s school records, Marcia sive Lovaas intervention I had been reading
sent a handwritten note to Keystone’s local about, and which Marcia mentioned explic-
Autism Resource Team member Dorothy itly in her handwritten note–Lovaas–which
McKee, a speech and language pathologist it seemed she knew very well how to spell,
based in Decorah who was part of Sue’s perhaps unremarkably, since she herself
state-wide autism support network, was of Norwegian ancestry.

“Mary Jane White is very open to you ob- In our home-school notebook, I brought
serving in Ruffin’s classroom and assisting Pat up to date on what Marcia and I had
her with home strategies. She has just

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been up to, and, I brought her up to date why he said that. There was a square or
on my own recent activity, my reading and nearly square window in the house across
thinking, the street. He has been using squares in
his computer program Millie’s Math House
“I have a set of Lovaas videotapes which to build Mouse houses, and we have been
show behavior modification trials for pre- playing with colored squares of paper. I
school children with autism learning to at- looked at the house and asked, ‘House?’
tend, speak loud, learn colors, shapes, pre- Ruffin replied, ‘Square house.’ I still don’t
tend and converse. It took me about two know exactly what his meaning was.”
hours to view the entire set.
September 2nd, fifty-three days after
“Catherine Maurice, a mother of two Ruffin’s diagnosis, I wrote Marcia and Lois
children with autism used these methods again, carefully and deliberately, not just
with her children when they were two, to share what I had observed of Ruffin, or
three and four years old. They are recov- what I knew of his autism, or of what I knew
ered, and were much more withdrawn than about autism in general, but what I knew
Ruffin is to begin with. They are in regular by then and firmly believed should be his
classes now, and no longer ‘test’ as having appropriate education, including “support
‘autism.’ I have her book, Let Me Hear Your therapy” and “related services” (a com-
Voice, 359 pages. pletely open-ended federal law category,
unique to each student). Later on our ad-
“Marcia seems to be familiar with ministrative law judge (ALJ), Dr. Susan Et-
Lovaas’s name. Perhaps you are too? I’ve scheidt found my letter significant.
seen his name repeatedly in the literature.
Perhaps it is legit? Do you have an opinion?” HER DECISION OF June 3, 1996.

Pat offered back, A letter from the appellant to Ms.
Boberg [Marcia] and Ms. Henry [Lois] dated
“I’ve heard the name Lovaas but have not September 2nd, 1994 began a series of
read much. I’d be interested in your video- correspondence concerning treatment ap-
tapes and books. Not much time right now proaches and methodology for Ruffin.
but things should settle soon.”
My letter opened the subject of consid-
Undeterred, and perhaps unsympatheti- ering Lovaas’s methods for Ruffin,
cally to the demands she faced in organizing
a new classroom, I continued to press, “Marcia, I will really be looking forward to
a home visit/classroom visit from someone
“Please let me know when you all are ready with the Autism Resource Team.
for the Lovaas tapes. I’ll bring them over. I can
pick up some things from you for more ideas. “I would particularly like to know that
Do you know where I can get or borrow some person’s opinion of the Lovaas method as
photographs of emotional faces?” described in The Me Book and accompa-
nying videotapes. I have a copy of the five
And, I continued to report to Pat nearly available videotapes here at my house.
every word Ruffin spoke and every trig- Short description of tapes enclosed (total
gering context, time, about two hours).

“P.S. Walking out of Joyce’s house, Ruffin “I would like to see this method tried with
said ‘square,’ but didn’t point or indicate Ruffin. See the enclosed article ‘Current

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Adelaide Literary Magazine

Practices in Early Intervention for Chil- “The other book is Clara Park’s The Seige.
dren with Autism,’ from Preschool Issues Although her daughter is not fully recov-
in Autism, edited Schopler (1993) which ered, she is a joy to live with, and not a trial,
addresses the comparative success of this and even though she was functioning at a
method. rather high level before this type of [Lovaas]
training, she greatly improved, however,
“Even the Schopler group in North Caro- after beginning the training at age fifteen.”
lina (TEACCH) which criticized Lovaas’s se-
lection of only “high functioning” children My letter rocketed by fax up to Tom in
to participate, acknowledges that his suc- Decorah with cover notes from Marcia and
cess rate (forty-seven percent of children so Lois expressing their rather widely differing
treated are in regular classes by first grade) personal reactions,
is probably due to the very high level inten-
sity of pre-school training. Certainly, it is “Tom, If you haven’t seen this you might
very intense. want to read it. What is the status of Part C
funding? Marcia. P.S. Dorothy McKee of the
“The method is on a behavioral model of Autism Resource Team is going to Waukon
discrete, repeated trials and very structured this Thursday to visit Ruffin’s classroom.”
opportunities for expanding functional play,
symbolic play, recognition of emotions and Helpful. Professional. Neutral.
extended conversations.
Lois to Tom,
“I have also just finished reading two
books by parents who made use of the “ENJOY.”
Lovaas methods. One is Catherine Mau-
rice’s Let Me Hear Your Voice. She educated Unprofessional. A bit snarky.
both her autistic son and daughter by these
methods when they were preschoolers. By the following Wednesday, September
They are now in ‘typical’ classrooms, and 7th, Tom had faxed my letter up beyond his
are recovered.” own pay-grade to Mr. Pratt and “Moe” in
Elkader with his own covering comment,
But not only for our Ruffin. There were
other students with autism whom I had in “Here is the letter we just talked about
mind as I wrote to Marcia, whose excep- on the phone.”
tional parents in our support group had by
then become my friends. These children Choosing to attach Lois’s copy to him
were a bit older, but could still benefit. So, with her comment,
I also wrote,
“ENJOY.”

END OF CHAPTER 4

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About the Author

Mary Jane White is a retired trial lawyer who also holds a MFA Iowa Writers’ Workshop, and
has been awarded two NEA Fellowships, one in poetry and one in translation. Her Tsvetaeva
translations appear along with early original poems in Starry Sky to Starry Sky (Holy Cow!
Press 1988) New Year’s, an elegy for Rilke (Adastra Press 2007); Poets Translate Poets,
(Syracuse 2013). After Russia: Poems of an Emigrant: After Russia, Poem of the Hill, Poem of
the End and New Year’s (a bilingual text) is forthcoming in 2020 from Adelaide Books (NYC/
Lisbon). Contact her at [email protected]. This is Chapter 4 of a memoir that won
the Les Standiford Fellowship for the Writers in Paradise Conference, Eckerd College, Florida,
for a workshop with Ann Hood.

141

LIVING IN THE EYE
OF THE STORM

by Wendy A. Miller

Wearing an oversized floral top, you sit on an While driving home, the words ‘the good
exam table, swinging your legs off the end kind’ loop in your mind like a catchy song
when the doctor enters the room. She greets on the radio. Pulling into the driveway, you
you and then probes your left breast. Her two see your husband’s car parked in the ga-
fingers stop at what would be eight o’clock rage. Knowing Matt is home and not still on
if your breast was a clock face.  This visit is a business trip relaxes your muscles from
a routine follow up after having a breast bi- your shoulders down to your pinky toes. “I
opsy. A family history of breast cancer com- have breast cancer, but it is the good kind,”
bined with your dense, lumpy breasts have you say to him without greeting, trying to
made doctors vigilant. Frequent ultrasounds, mimic the doctor’s optimism. His eyes tear
mammograms, and biopsies—always nega- up, and his strong arms open, pulling you
tive—have lulled you into a sense of invinci- to him.
bility. Most people would be anxious about
the results, but not you. At dinner that same night, you tell your
only child, a fifteen-year-old son, that you
“It’s cancer,” she says, “Right here.”  have breast cancer. In your matter-of-fact
mom voice, as if you are going over the
“Is that the correct test result?” you ask. week’s schedule of events, you say, “So, I
I can’t have cancer. There is no way I have got some bad news today. Last week I had
cancer. a test. Well, it came back positive. I have
breast cancer.”
The doctor removes her hand. Her lips
pucker, one eye crinkles as she grabs the His face is blank. His silence keeps you
report and tilts the paper towards you to talking. “Grandma had breast cancer when
confirm your name and birthdate. “It is the she was just a bit older than me, and she
good kind,” she says. You are not sure what has never had cancer again. She is in per-
that means, but you hang on to those words. fect health.” Still no response. “You know
She writes ‘good’ on the test report next to she drags Grandpa to the mall to walk with
the tumor description. You dress and stash her every morning.” 
the paper into your purse. 

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Revista Literária Adelaide

Finally, a reaction, a half-smile and si- Is there anything we should know about
multaneous grunt as he acknowledges his you?
grandparents’ routine.
I climbed Mount St. Helens two months
“I will need surgery and have lots of ago. I am in good shape and eat healthily.
doctor appointments, but I will be okay. Our How can I get cancer? I’ve never smoked,
family will be just fine.” not even weed. 

He nods his head, and his blue eyes As you received no response, you
meet yours, but his expression remains wonder if she, or anyone, looked at it.
unreadable. His emerging manliness both
comforts and jolts you. He cleans up the Her outstretched arms indicate she ex-
dishes without being asked. pects a hug from you, so maybe she did read
it and your answers suggested you are the
Researching ‘the good kind’ of breast huggable type? But you recoil, not in any
cancer, you learn about the different types mood to be touched by strangers. As the
of tumors. Your kind, HER2 negative, may patient coordinator nurse, her job is to be
grow more slowly and is less likely to come compassionate, helpful, and guide patients
back or spread to other parts of the body through the cancer treatment process—the
compared to the other tumor types. If there warm-up act for the white coats. 
is such a thing as ‘the good kind,’ perhaps
this is it. But you don’t believe any cancer Matt sticks out his hand, “Nice to meet
is good. you. Lots of road construction made it hard
to find the parking garage,” he says.
A full team of specialists is assigned to
manage your care. Matt, having taken the Grabbing his hand and shaking it, she
day off from work, accompanies you to the says, “Yeah, we’ll all be glad when the con-
appointment. The towering glass building struction is done. We’re hoping the new
advertises state-of-the-art treatment. building will be finished early next year.”
Views of the Columbia River surround the She smiles at you and says, “Our cancer
seventh floor waiting room. Looking out, all team is ready to meet you.” As she walks,
you see are shades of gray—gray sky, gray she turns her head to look at you. “The
water, gray sidewalks, and tiny gray pedes- breast surgeon, radiologist, and plastic sur-
trians. It is a typical dishwater February day, geon will meet with you one at a time. We
matching your state-of-mind. have them set at twenty-minute intervals,
but you can take as long as you need,” she
“It is nice to put a face to the name,” says explains.
a smiling nurse whose friendly demeanor
and soft body reminds you of a teddy bear. You and Matt follow her to the exam
You had exchanged a few emails with her room where you sit, listen, and drink bottled
before this appointment. In the email, she water as each of the specialists filter in at
had you fill out a get-to-know-you type their scheduled times. The breast surgeon
questionnaire. It asked questions like, What arrives first. Her eyes zero in on the neck-
are your fears?  lace you are wearing as she enters the room.
It was a birthday gift. You turned forty-nine
Answer: Dying and disfigurement. Plus, eleven days before you got the cancer news.
losing my hair. The pendant says, ‘Believe.’ All business,
she delves into the nitty-gritty regarding

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the surgery options—either a lumpectomy “Weakened chest bones,” he says and
to remove the tumor and preserve the re- then adds with a laugh, “So if you ski, this
maining breast or a mastectomy, complete might be a concern.”
removal of the breast. “The lumpectomy
followed by radiation is equally as effective You do ski, but don’t say anything. Why is
as the mastectomy. It is your choice as to he laughing? Do women with breast cancer,
which treatment you would like to do,” she not ski?
says.
“Heart problems later in life and possible
“How long does the surgery for a mastec- skin rashes during treatment are a few
tomy take?” you ask. more adverse effects,” he says.

“Six to eight-hour surgery for a double You mull over the risks and watch the
mastectomy—removal of both breasts with window washers.
reconstruction.”
“Our technology can pin-point the area
“That’s a long time under the knife,” you precisely,” he assures you.
say.
The mustached plastic surgeon whose
She nods and says, “Not all women forehead doesn’t move arrives with sam-
choose reconstruction.” ples. The inserts remind you of the Ziploc
bags you filled with water as a kid to pre-
“A lot to think about. Thank you.” tend your Barbie dolls slept on waterbeds. 

The breast surgeon exits, and the ra- With the informational sessions com-
diologist enters, trailed by an entourage plete, the exam portion begins. A nurse
of people, crowding the room. Dressed in gives you an extra-large wrap-around top to
white jackets, their youthful faces remind put on, even though your size is extra-small.
you of trick-or-treaters coming to your door The surgeon returns and feels your breast.
on Halloween. The radiologist introduces Then the plastic surgeon comes back with
them as residents, “Mostly, here to observe a camera. He is apologetic that he must
and learn,” she says, “Doctor Garcia, a sec- photograph you topless. He closes the
ond-year resident, will explain the process drapes shutting out the view of the window
and answer any questions.” He steps for- washers. Working quickly and professionally,
ward and begins speaking. he instructs you, “Face front. Turn right and
look at the corner. Turn left now.” It reminds
Glancing out the floor-to-ceiling window, you of mug shots on a police TV show. You
you spy window washers on scaffolding imagine your breasts put in a book where
scaling the building you are in, a floor or victims of crime try to identify them as per-
two down, close enough to wave. They are petrators. A few awkward giggles escape.
a distraction from the grave conversation
happening in the room. “Adding radiation The final appointment is with the genet-
after a lumpectomy lowers the risk of cancer icist. You aren’t on her schedule, but she
recurrence in the affected breast,” says makes time. You go to her office, where she
Dr. Garcia. You can see the other residents asks about your family history. To answer, you
mentally taking notes, as he continues to ‘phone a friend,’ or rather, text your mom.
explain.
“What kind of cancer did Uncle Jim die
“What are the side effects?” asks Matt. of? Did anyone have ovarian cancer?” you

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text. She texts you back right away with the all night, you watch the clock, counting
information. down the hours until dawn. By the end of
the week, you are sleep deprived and in
You had told her a few nights ago about a heightened state of anxiety, muddling
the diagnosis over the telephone because she through daily routines. 
lives out of town. Her response was, “Well,
SHIT!” She then told the rest of the family, While pureeing a mushy avocado for salad
saving you the burden. None of them live dressing one night, you slice through your
close. Your older sister called about five min- pointer finger with an immersion blender.
utes after you hung up with your mom. “Wow, “Shit, you didn’t just do what I think you did?”
when Mom had it, I never thought we would asks Matt, having heard the crash of the
actually get cancer,” she says. blender hitting the floor and your swearing
as you grabbed the towel next to the sink.
“I guess your odds have just increased,”
you say. I always knew I would get it, just “I did. You need to take me to the emer-
not today—maybe someday. gency room.” 

Once the geneticist completes the family “Are you okay? Is it bad?”
history interview, she sends you to the third
floor. A nurse draws a dozen or so tubes of “Um, my finger feels still attached, but I
blood from your arm. The genetic testing don’t want to look at it. I feel queasy.” 
will take six to eight weeks. You wish you
could skip the commercials in this drama In the ER waiting room, you fill out paper-
like you do when you stream a show or just work about your health with your uninjured
fast-forward to the happy ending. Will there right hand. You check the ‘excellent’ health
be a happy ending? box but then think again. Maybe cancer
puts you in the ‘good’ health category or
By the end of the day, the fact that you perhaps just ‘okay’? You don’t know what
have cancer has sunk in. A treatment de- box to check, so leave it blank. The hospital
cision weighs heavily—either a bite to re- sends you on your way with seven stitches,
move the tumor followed by baking the a splint for the broken bone tip, and a pre-
surrounding tissue or completely carving off scription for an antibiotic. You leave, feeling
your breast. On impulse, you agree to the stupid for making such a careless mistake
lumpectomy because it seems less invasive that caused more fuss about your health.
with quicker recovery time. But you have
nagging questions: What if cancer comes Even though you committed to the
back? Will I have to repeat this process? For lumpectomy, you continue to grapple with
peace-of-mind, would it be better to get rid your choice as the surgery date draws closer.
of them both? Will people think I just want The options remind you of a Choose Your
a boob job?  Own Adventure book from childhood. The
characters in the books come to a cross-
You spend hours on the computer re- roads in their perilous journey. The reader
searching the tumor, obsessing about decides their fate by choosing the next
whether the mastectomy is the better move. To continue with the lumpectomy,
choice. You feel like you are a leaf at the turn to page four. To change your mind
mercy of a violent wind riding its current and choose the mastectomy, turn to page
through a fierce storm. Tossing and turning six. Will it be a happy ending or horrifying

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fate? Only now, you can’t flip back through but it was caught early. I will be fine.” She
the pages and try again if you don’t like the stops walking, and her blue eyes meet
result. yours. There is no superpower shift, but you
feel peace with her gesture, a light touch
The doctor calls and wants you to have on your shoulder, more than any words
an ultrasound. “They want another look at spoken as you walk up the hill towards the
something they saw on the MRI you took a clubhouse.
couple weeks ago,” she says. After the ultra-
sound, the radiologist explains, “There are Most other acquaintances you tell by
some spots on your other breast. According email, text, or phone. You also post on
to protocol, we should schedule a follow up Facebook. Matt is a retired Air Force officer.
in six months to see if there is a change.” Having moved every two to four years for
You don’t want to repeat cancer treatment twenty years, you have friends around the
in six months on the other breast. So, you world that you think of fondly but only keep
change your mind and flip to page six, the in touch with via social media and Christmas
double mastectomy surgery, hoping it is a cards. If they were going through this, you
happy ending. “Are you sure you want to do would want to know.
both, even though just one has the tumor?”
asks the surgeon.  It is a relief to tell people. You text Robin
to let her know the news is no longer secret
“Yes, I want them both gone. I can’t re- squirrel: “I told a bunch of people today. I
peat this.” Besides, your boobs are like a feel optimistic. I know God has this. If
sweater set. You can’t fathom wearing one anyone asks, just say I need prayers.”
without the other. 
The most common response to your
Sleep finally comes after choosing to re- news is, “Can I do anything for you?” Not
move both breasts. A few days later, a test prepared how to answer this question,
result comes back saying there is a gene other than requesting prayers, you smile
mutation, meaning a higher chance for re- and say, “Thank you.” Admitting you need
currence and possible risks for other can- help feels weak, and makes you think you
cers. This new information gives you more are disappointing people. You prefer to do
confidence in your decision. the giving in relationships, rather than be
the receiver. Being perceived as strong is im-
While golfing, you tell your friend, Robin, portant but acting like you have it handled
that you have cancer. Her grandmother was makes you feel isolated because people get
a famous actress during the 1920s when the impression you want to be left alone.
silent films were popular, and Robin has You give some thought to how best you can
her grandmother’s movie-star looks. Now be supported and ask for meals. Even your
divorced, Robin emerged from her abusive friends who don’t like to cook sign up to
marriage with grace, wisdom, kindness, and bring dinner.
an optimistic spirit. All traits you admire and
want to emulate. You hope a bolt of light- Your mind is a ping-pong ball the week
ning will transfer her superpowers to you before surgery. You are desperate to refocus
when you tell her. your energy on something other than the
thunder rumbling towards you, so you ask
You wait until you walk off the green on your friend, Tammy, for help. As an extro-
the last hole and say, “I have breast cancer, vert-wanna-be, you enjoy riding her fun

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bubble at social events where she does all The next day, the words a party goer
the talking. whispered come to mind, “Cancer can be
absolutely terrifying, but there is also joy
In a text message to Tammy, you ask: and beauty that can be found in the darkest
“Will you host a boobie wake for me?” you of places.” She has lived with a brain tumor
go on to explain, “When I laugh, I feel like for the last eight years. Posting photos of
I am stopping cancer from growing.” You the party on your Facebook page, you write,
also need her help inviting people because “My boobs had one hell of a send-off. I was
it seems pathetic to plan your own wake. truly shown joy and beauty last night. Thank
you.”
“I would love to help,” Tammy replies, but
guilt for asking creeps up your spine. Will On the morning of the surgery, you wake
people come? What if they think I am just before dawn and pray: “This is the day the
seeking attention? Despite these worries, Lord has made; rejoice and be glad in it.”
you move ahead with the wake because you You look at your breasts in the mirror. The
crave the chance to release your pent-up breasts that made you popular in middle
fears and anger like a prizefighter going into school, the ones your husband has cupped
the boxing ring. in his hands while spooning every night
since your diagnosis, the ones that fed and
You look for confirmation from Tammy. comforted your infant son. You wear your
“Do you think it is weird that I want a boobie pink ‘fuck cancer’ shirt to the hospital.
wake?”
In the pre-op room, the nurse takes
“Not at all,” she texts back. “I think it shows your vitals, and the plastic surgeon marks
amazing strength and courage. It also pro- your body with a pen. Before you leave for
vides you the opportunity to be surrounded surgery, your minister says a healing prayer
by people who love and care about you. In a while laying her hands on your shoulder, and
way, it seems to make it easier for others.” As your husband kisses you. A small wooden
always, she knows just what to say. cross is clenched in your hand until they roll
you into the surgical suite.
On the night of the wake, you audibly ex-
hale greeting the first invitees who show as You wake after surgery and look down at
they trickle in the alehouse. An affectionate your chest and see an old-lady style white
buzz circulates through the air. There is a bra. The bra creates the illusion that you still
need to bond and support each other, not have boobs, but you know the breast sur-
just you, that lingers—hope billowing in- geon scooped them out like ice cream, and
stead of cigarette smoke puffs. Friends the plastic surgeon filled the space with bal-
keep buying Matt many drinks. He needs to loons. Drainage tubes dangle out the sides
forget too. Your best pal, who lives an hour of your body.
away when the traffic is good, brings sugar
cookies frosted to look like boobs. The bar In the future, one of the balloons will
owner, a breast cancer survivor sympathetic leak. The plastic surgeon’s nurse will pump
to your plight but exhausted from her long the broken expander up like a floaty pool toy.
day, kicks everyone out at midnight. Not It will deflate a little each day. By the end of
wanting the night to end, you, Matt, and the week, it will be flat and need pumping
some of the guests walk across the street up again. Almost every Friday for five weeks,
to a saloon to karaoke.  you will go to have your boob inflated.

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In the future, ‘the girls’ will look center- The oncologist will prescribe an aro-
fold worthy. Still, they will feel like skin-and- matase inhibitor to decrease the amount
nipple-covered life rafts drifting out at sea, of estrogen your body makes, since your
separate from your ocean body.  tumor thrived on estrogen. This little pill’s
job is to prevent cancer from returning. You
A couple of weeks after your operation, will take it daily as instructed, but you will
the breast surgeon will call and ask, “Did experience what you believe to be a rare
you have a ‘premonition’ to remove the side effect of the medicine. Over time, the
other breast? The lab report indicates there drug will slowly take over your thoughts like
were two more tumors in what we thought a snake displaced from a flooding river. It
was a healthy breast.” settles in your mind, slithering around your
brain, squeezing it, suffocating your ability
“Hmm,” is all you will say, biting your to think, and choking out pleasure and hap-
bottom lip and thinking back to the ultra- piness. A day will come when your nostrils
sound protocol to wait six months. Thank will smell the stench of despair, and your
you, God, for the right decision. ears will hear the gnashing of teeth.

“We found micro metastases in the That day will happen when you are
lymph node I removed. The hope is cancer hiking with a girlfriend along a river swelled
has not spread, but there is no way to know with snowmelt, chatting affably about
for sure.” nothing in particular. While you climb the
trail, you will stare into the river’s swirling
“Well, that sucks,” you will say.  Did my eddies and long to join the gushing anger
indecisiveness, which prolonged scheduling floating down the hillside. Your accidental
the surgery, put me at greater risk? slip on the muddy banks, followed by a cold
moment of panic and sinking into darkness,
But on that day—the day you wake from will be a relief from your zombie-like state.
surgery—you are naive about what lies Through the clouds, the sun will break the
ahead. The eye of the storm is directly above serpent’s constriction, preventing you from
you. You feel calm, peaceful, and free from taking that fatal step. Was that God’s saving
worry. It is glorious to be alive. Soon, you will hand or a guardian angel?
experience the eyewall where the winds are
the most potent, and the thunderstorms are You will go home after the hike and cook
their most intense, but at the moment you dinner for your family. You will continue to
wake from surgery, you do not know you are walk through each day’s motions but re-
in the middle of a hurricane. You breathe in semble a robot mom, an automated wife.
the fresh air and think your cancer journey Your husband will notice you are short-tem-
has ended, but it is still spinning. pered and pessimistic, but he will give you
space. The snake will warn you to keep your
You will need three more surgeries; two gloomy thoughts secret. 
will involve breast reconstruction. The other
will remove your ovaries—more girlie parts Visions of your body dangling from a
vanishing. white sheet tied to a powerline tower will
play on repeat with the words, “You suck,”
A test on your tumor will reveal that singing continuously as the soundtrack—
chemo doesn’t work on it. You will be re- day after day for months. Love for your
lieved you will not lose your hair, a rainbow
amid the tempest.

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