Care

Barbara Fisher

Without
Care
Chapter
XVIII
 Barbara Fisher

Care
Without
Care
Chapter XVIII

First published by Avon Books

(a division of The Hearst Corporation)

© 1972 Barbara Fisher

Reprinted August, 2010

All rights reserved.
For information address
Ten Penny Players, Inc.
www.tenpennyplayers.org
 The after-visits proceeded normally. We
removed the cast, soaked the sutures, began cut-
ting away, and continued the normal routine.
Athelantis developed another ear infection, a real
one this time, and we went to our pediatrician for
treatment. While there she asked whether or not
the eye people had looked at him yet that year. I
said no; it was time for an appointment. He had
been seen twice in the eye clinic. Both times his
eyes had been responding normally. They had
been limited in the amount they could test since
he’d been so young, but everything other than his
wandering right eye seemed fine. I called for an
appointment.
We arrived at the clinic at 9:00 A.M. We were
seen by the resident at 9:45 A.M. Athelantis kept
covering his eyes to prevent inspection. The resi-
dent tried unsuccessfully to cajole him into coop-
eration. I held Athelantis while the doctor squirt-
ed drops in the eyes to dilate them. The proce-
dure had be repeated an hour later because the
eyes were stubborn and were only halfway dilat-
ed.
 He checked Athelantis’s eyes for muscle
reflexes, response to light, pupilary reaction (this
was before the eyes were squirted and dilated). It
was now about eleven thirty. He said that he
wanted to take Athelantis over to the adult wing
of the clinic where they had more equipment in
order to check his diagnosis, but that he was con-
vinced that there was hardly any vision in the
right eye, that the optic nerve had become atro-
phied over the past year. He said that it was his
opinion that it had been caused by one or the
other of two things—either this was a residual
effect of the original pressure or we were faced
with another premature closing of the sutures. If
it was the former he didn’t know if they’d operate
because there was virtually no chance of restoring
the vision. If it was the latter, the neurosurgeons
would probably have to reoperate on the cranium
in order to protect the sight of the left eye and
also prevent brain damage.
I felt like the Puerto Rican mother who had
come into the hospital with a normal child and a
half hour later discovered he was retarded. I’d
had no hint that he was becoming blind in one
eye. His spacial relationships and depth percep-
tion seemed normal. He had no trouble climbing,
dancing, picking up objects, or apparently just
seeing. I knew we were at the beginning of
another bummer.
We followed the resident to the adult wing
where a nurse, a very nice lady, mummified
Athelantis. She wrapped his arms and legs in a
sheet so we could hold him while the doctor
looked into his eyes with direct and indirect light
instruments. In order to see clearly, since
Athelantis mummified or not was writhing,
shrieking, and rolling his eyes, the doctor had to
prop the eyelids open with an instrument that I
can only describe as an object similar to a tweez-
ers only operating in reverse; it kept the eyelids
propped open while the eyes suffused with blood
from Athelantis’s ire and the doctor looked.
He said that the left eye looked very good; it
was only the right that seemed to be the problem.
He wanted Athelantis to have orb x-rays while we
were there. They’ve developed a special machine
that x-rays the eye sockets. Before going to x-ray,
the resident decided to take us to see the neuro-
ophthalmologist who had seen Athelantis when
he was only six weeks old. He had decided that it
was important to have the older doctor examine
Athelantis. Gathering up the sweaters, hats, and
coats we followed him up and through the inner
sanctums to locate the doctor. He was in one of
the other neurological buildings, we discovered
after several phone calls. The resident put him
on page and we went back down to the eye clinic.
We waited about forty-five minutes until the x-
ray technician came back from lunch. We didn’t
go to lunch because we didn’t know what time the
technician or the older doctor would arrive. One
of the receptionists gave Athelantis a chocolate
turkey and I plied him with many glasses of
water. He was grouchy and miserable.
I had only expected to be at the hospital for
about an hour. The eye clinic is run efficiently
and quickly and we’d never been so delayed
before. We’d never had such problems before.
I hadn’t brought any lunch for Athelantis. I
only had come with two Pampers (I was down to
one, but knew it was on its way out also) and I
had no checkbook or money with me. Since it was
close to Christmas and the subways and streets
were heating up, I knew I shouldn’t carry any-
thing in my bag. I’d written the check out to the
hospital before I’d left home and dumped all my
money except about fifty cents onto my drawing
board. I left my checkbook and credit cards at
home. All I carried (in case I was run over by a
truck and someone needed to know who I was)
was my membership card in the Author’s League
and my press pass to the Whitney Museum.
When I‘m really down I feel fat. I began to
metamorphose into the world’s most obscene
blimp I also feel shabby. My wonderful red wool
winter jacket starts fraying under by eyes. My
socks keep falling down. My hands get dirtier-
looking; the ingrained paint mocks me. I know
that I’ve been making Christmas ornaments all
month and the stuff will wear out eventually, but
anyone else would just think dirt.
The technician finally arrived. Action. I
energized slightly. I held Athelantis’s head while
he went in another room to shoot. Two little red
ping-ping size eyeballs were braced to the table. I
had to hold Athelantis’s eyeballs over these so the
machine would register. The first was fine; the
second x-ray had to be redone.
The x-rays would take about ten minutes to
print. While we sat waiting the older doctor came
in to find Athelantis. My child, bored to death
with all the checking and peering, was being his
most uncooperative. Back to the adult wing we
went. Athelantis was provoking much excite-
ment. The young residents came trooping after
the senior doctor. We mummified Athelantis
again. I held his legs and chest. One of the resi-
dents held his head. The senior doctor looked at
his eyeballs. He didn’t need the instruments to
keep the lids propped open. He confirmed what
the younger doctor had said. The young residents
(three of them) took turns staring into
Athelantis’s head and I held on and he writhed
and stormed. My nose was beginning to water;
my glasses started misting over; every once in a
while a tear paraded out of my ducts. I was exer-
cising extraordinary control. The muscles in my
head were tightening and a head ache started,
but I would not cry in front of the doctors. An
occasional tear didn’t count. But I wound not cry.
The senior doctor asked when Athelantis had
had his last neurological checkup. I explained
that I’d been asking to have him seen all year,
every time he’d been admitted for a hand opera-
tion, but no one had been interested. I told him
that we had finally gone to another hospital to
have neurological x-rays taken.
He and the young resident asked me to send
for them. I’d been trying to interest the hospital
in the x-rays for two months.
We disbursed. They to their other patients;
Athelantis and I back to the children’s waiting
area. The young resident claimed the x-rays and
went to find the ophthalmological radiologist. He
wasn’t in his office. He came back and said that
he wanted to discuss the x-rays with the radiolo-
gist and with one of the members of Athelantis’s
original neurosurgical team. I gave him the
name of the surgeon that I had met. Athelantis
had fallen out on my lap. The doctor and I decid-
ed that I would take Athelantis home and he
would try to contact the radiologist, the neurosur-
geon, and the other hospital for the neurological
x-ray and call me later in the afternoon with their
opinions. It was now 2: 45 P.M.
I roused Athelantis and we dressed. We went
upstairs to find a pay telephone. I called Ernie at
his office and there was much sobbing. Ernie
said he’d be home early; he wouldn’t go to school
that night.
Athelantis and I were both exhausted and
eager to be home. When we arrived he went right
to sleep, clutching his blanket in his rocking
chair.
The night passed with much hysteria. I felt
as though we had regressed two and a half years.
The following morning I took Athelantis to school.
I didn’t feel his life should be disrupted needless-
ly. He didn’t know what the doctors had said. He
was happy to be at school and waved cheerfully at
me as I left. I called the hospital. The doctor
hadn’t been able to reach the neurosurgeon who
had been part of the original team. He said he’d
call me later. It was a slow miserable day. I
worked on some bread dough. Kneading is good
therapy. I spent time at the typewriter. Writing
it out keeps me together.
The doctor finally called at about two-thirty.
He had spoken to the neurosurgeon, who wanted
to see Athelantis the following Wednesday. He
had said that he thought Athelantis would have
to be hospitalized for more neurosurgery, that the
pressure must be building up again and the only
way to protect the left eye would be to operate.
They were calling the other hospital for the x-
rays. The eye doctor wanted me to keep him
posted on Athelantis’s operating and hospitaliza-
tion schedule. He said that after they finished
with the neurological work there were things they
might be able to do in ophthalmology .
Obviously, they were all concerned at what
they had discovered. Yet, the neurosurgeon
wouldn’t see Athelantis for six days because he
had to wait for the next children’s neurological
clinic.
I was at screaming level. We had to protect
Athelantis; prevent blindness. But I couldn’t
stand our having to deal with the neurological
department again.
Since that hospital was the most experienced
in New York with Apert’s babies, the only alter-
native solution would be to find another hospital
for a conferring opinion that wasn’t in New York.
I couldn’t cope with that problem. I couldn’t cope
with anything more complex than my routine
household things. I was operating at minimal
efficiency.
The tear ducts were continuing at monstrous
speed, however. We have a friend in England
whose child has neurological problems. She
brings him to this country to an institute in
Philadelphia that has been able to provide mirac-
ulously successful treatment for him, along with
protecting her own psyche. I couldn’t navigate
the phone call. Fran called Philadelphia for me.
She told the receptionist briefly about our prob-
lem and they immediately switched her call to
someone who had heard of Apert’s. The institute
had treated other Apert’s children. Fran was told
that the woman on the phone would confer with a
team of their doctors and they would get in touch
with us the next week. We had an out. Nothing
definite was resolved, but I could begin to see an
alternative path and that bolstered me.
I called my mother. I had been putting that
off for two days. I couldn’t deal with myself much
less an hysterical grandmother. She was very
upset, but we were able to discuss it rationally
because I had gone beyond hysteria. She said
that she’d loan us the money for the first consul-
tation in Philadelphia if they would see us.
On Tuesday we were going to the hand clinic.
At that time I would also go down to medical
records and request that they send duplicates of
all his records to the other hospital and make an
appointment for an examination there.

(To be continued)