How Measles Encephalitis Harmed Harriet

Harriet as a young girl. Picture provided courtesy of Harriet.

Harriet
was born in August 1965, by far the youngest of six children: her next older
sister was 8 years older. The family did not have much time to just enjoy the
new baby. In December 1965, the family was headed to a Christmas concert, baby
Harriet cradled in her mother’s arms (pre-carseat days). Their plans changed
when the baby started seizing. The family rushed immediately to the Emergency
Room. The hospital intake form had “measles?” written on it next to the baby’s
vitals and symptoms (“seizures”). During the next few weeks that Harriet spent
at the hospital, the diagnosis was confirmed: measles that led to encephalitis.
Harriet’s condition was serious: her family did not know if she would live or
die. The hospital told them, explains Harriet, “that even if I did live, I
would be so severely mentally retarded that they should put me in a home.”
Harriet survived, intelligent and articulate. She did,
however, suffer lifelong damage. She says: “I know I have scar tissue on my
brain because when I was nine or ten I was taken for a CaT scan, at that time
it was a brand new expensive machine, it was so exciting and I was to be one of
the first ever to use it and I
moved. So we I had to do it again. The neurologist told my mother about
lesions on my brain. My sister remembers it described as shadows on my brain.”
The cost to her was physical, cognitive and social.
A Childhood Clouded by Risk:
One
of the costs of the encephalitis was uncontrolled status (epilepticus) seizures,
meaning one seizure after another after another for more than an hour (a
potential consequence of viral encephalitis). This meant Harriet was repeatedly
hospitalized. It also meant she needed extra protection against disease. To
protect her, she was kept at home, not sent to daycare, and her parents had to
choose a caretaker who took no other children (except for Harriet and her own
children). Childhood seizures often resolve at age 6 or 7 years so her
schooling was delayed.  Harriet did not
go to preschool or kindergarten but did enter school for Grade 1. While her
parents did not completely isolate her, wanting her to have a normal life, she
was allowed to play with only one or two kids at a time, and her parents made
sure the kids she played with were not sick. Her parents worried constantly, unsure their
youngest will survive her childhood.
Harriet
missed 28 days of her first grade, and had two or three hospitalizations that
year, failing first grade. Two events stand out in her memory:  “I was left in my sister’s care one time and
when she came into check on me I was not moving.  She was screaming and crying ‘I killed her, I
killed her.  She’s dead.  Mom and Dad are going to kill me.’  I must have been having an absence
seizure.  One of the bonuses of measles
encephalitis is tormenting your older sisters.”
In
another event, “two of my sisters took me for a treat to McDonalds.  This was not like it is now when people eat
fast food regularly: this was a once in a year special occasion.  I must have said I felt tired and this set off
the panic.  I was grabbed and rushed out
of there to the hospital emergency room and one of my sisters was yelling that
I was about to die.  I was fine and I am
still pissed off (a little) about leaving my special treat.” Harriet’s sisters
believed that fatigue was an indication a seizure is about to arrive. That was
not the case: fatigue was a separate and additional price of the encephalitis.
When
Harriet was 7, her medication was changed. She is not sure if it was the change
of medication or just growing up, but she never had another seizure as a child. The
seizures returned in her mid-twenties. Harriet says: “I was hooking up the TV. My daughter heard a strangled cry
then a loud thump and ran down the stairs and saw me seizing. My daughter and
her friend called 911 and she said, ‘my mother’s in shock!’ The operator,
trying to understand her, asked: ‘she’s been shot?’ And she said ‘no, she was
shocked. She was hooking up the TV and she was shocked.’ And the operator goes,
‘oh, she was electrocuted?’ That’s too big of a word – she was only nine.
Luckily it was just a simple seizure, not like when I was a child. It
aggravates me when other parents describe their child’s simple seizure as their
worst nightmare, I know it looks scary, but if a couple of nine year olds could
handle it then other people can as well.” Harriet’s neurologist was not
concerned either despite Harriet’s history. Harriet would have two more
seizures before it was decided to use medication.

Harriet and her daughter as a baby. Picture provided courtesy of Harriet.
Physical Price:
The physical consequences of the encephalitis range from unpleasant
to life-threatening, brought here in no particular order.
Harriet describes a variety (1001 types) of migraines that
affect her. For brevity, I will only mention a few. She has the classic,
painful migraines, various optical migraines, and bizarre neurological
migraines. In one type of optical migraine words cannot be recognized as such
and individual letters act like pixels creating a picture. 
The most severe migraines she has leave her completely
unable to respond. She says “I don’t know my own name, I can’t do simple tasks
that I’ve done before, and at the most extreme I lose postural control and I
slump over and freeze” (though she has never actually fallen).  These episodes leave her completely helpless.
She has hyperaccusis, a situation where “your brain amplifies ordinary sounds, I
hear my hair cracking.” “You can’t sleep because the pillow makes too much
noise. I hear the wires in the wall.” Earplugs don’t help, because you would
hear the sound of the earplug. 
In addition, she has both high and low blood pressure. She
explains that although most people worry about high blood pressure, low blood
pressure can cause the heart not to beat enough and “you can’t get enough blood
flow.” So Harriet has to carefully monitor her blood pressure.
She doesn’t handle heat well, which she explains is common
among those that suffer brain injury, but in her case, it’s made worse because
she does not sweat properly (not because of dehydration) and she cannot always
properly sense temperature.
She suffers from non-recoverable fatigue, which she
describes as “not brought
about by exertion, and not curable by rest. It’s brought on by doing your usual
routine. Though I do find that one of the most common triggers is
decision-making, going shopping. It’s a severe fatigue, and you can’t rest your
way out of it like normal fatigue, and that’s probably one of the most
debilitating things.” That is one of the reasons she is unable to work.
Cognitive Impairment and its Social Costs:  
A
number of cognitive problems make social interaction much harder for Harriet
than for most people.
Harriet is unable to recognize faces. This caused problems
for her throughout life. She says, “I
grew up in a small town where everybody knew everybody, and I didn’t know a
soul. I have to depend on people recognizing me. They would think I was stuck
up because I didn’t acknowledge them on the street, but I didn’t know who they
were.”
Even
today, “if you change your hair I don’t know who you are. If you stop me in the
grocery store and I’m used to seeing you in the office I don’t know who you
are. Even my daughter – it’s kind of funny, but I can recognize the way she
walks. I have to do a great deal of thinking so I can recognize her, but
basically I recognize her clothes, if she changes her hair and gets news
clothes I don’t know who she is, and I have to depend of how she walks, because
I can recognize how she walks.  But you
show me a picture of her face and I might not recognize her.”
The
combination of lack of facial recognition and delayed cognition, which she also
has, leaves her vulnerable to manipulation: “when someone is being nice to me I
can’t sense if someone is untrustworthy.” On the other hand, she may say things
that are not socially appropriate (“the blurts”). Or be accused of manipulation
because of responding directly to question (“terminal honesty”)”. 
She has
memory problems – problems with word recall and with remembering appointments
and what to do. Together with delayed cognition, this too makes social
interaction and daily life complex:  “the
only times I’m able to respond during a conversation is to use routine
building. You have to prepare for every little thing. Even for normal things in
your daily life you have to build routines into them.” Luckily, “…technology
has caught up and for rare events you can program them into your smart phone, and it would beep and warn you
that it’s coming up. And that’s because otherwise it just doesn’t exist.”
Finally,
Harriet suffers from an exaggerated startle reflex and a parasympathetic
nervous system disorder. This means that her body overreacts to situations.
Harriet gives an example of her computer crashing, and her reaction was to run
downstairs and find herself sitting in a chair, her body vibrating with rage
but calm in her head. She explains how it can exacerbate social interactions:
“if I complain at a store, if there’s a sensitive person there, they will
recognize all the non-verbal signals that my body is giving off. I might be a
little frustrated but my body overreacts, and I’m giving out signals of rage. They’re
reading this rage, and I can’t get them to calm them down to listen to what I’m
actually saying.”
Harriet lived with the after effects of the measles
encephalitis all her life. Measles leads to encephalitis in about one in athousand cases.
The MMR vaccine, in contrast, had a reported incidence of one in a million or much less,
and causation is in doubt.
Harriet says: “Because of the contrived
controversy about the MMR, I’ve been trying to explain to people. Because
vaccines are so effective, people no longer know what measles looked like. I
consider myself on the mild side of the severe consequences of measles,
especially being four months old – I was most likely to die in that age. I was
in absolute terror when I first learned about SSPE [an incurable and fatal
complication of measles; see also here, here and here], because I
was trying to figure out why all these changes were happening to me. It was 10
minutes of absolute terror reading about it, and then it was, okay, this is not
it, it would have killed me years ago, this is something else. But that was
terrifying.” Everytime I reach a different life stage(school age, puberty,
mid-twenties, and now perimenopause) I have different cluster of symptoms.  My neurologist sent me for a MRI  because of the changes and “weird”
brainwaves.  She concludes: “I’m trying
to speak out. People just don’t know that this is the real risk. It terrorized
my family for years.”

Acknowledgments: Thank you to Harriet for sharing her story and working with me on the writing, to Alice Warning Wasney for reading my draft, and to Dr. Nathan Boonstra for his comments and help in understanding the medical issues. 

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The Aftermath of Phil’s Mumps

Today, Phil is a successful software engineer, father and husband, remarkably articulate and smart. It wasn’t smooth sailing getting there, though.

In 1964, Phil was 8, in third grade. He thinks he got the mumps from school: at that time, pre vaccine, it was going around. He had a “fairly standard course of mumps, with the swelling and so on. And then several days into that I was feeling better and was in my PJs on the floor playing with whatever it was I was playing with at the time, and I heard a ringing in my left ear and then nothing.” He could no longer hear in that ear. “And then shortly thereafter I started feeling very dizzy and the vertigo started. What happened was the world started spinning counter-clock-wise around an axis somewhere up and to the left. And it took my brain about a week to sort out and the vertigo to subside.”
Phil’s family were members of an early HMO, and the head of pediatrics there examined him and confirmed that he had encephalitis as a complication of mumps and that the “encephalitis severely damaged the auditory and vestibular nerves on my left side. There was deafness on the one side.” The vestibular nerve does a number of things, but most importantly for this story, helps maintain balance.
All his life, Phil lived with the after-effects. The encephalitis “pretty much knocked out the vestibular nerve. Many years later as an adult my intern heard the story and he made me a bet he knew he could win: he said ‘I bet you can’t walk a straight line with your eyes closed.’ And of course he was right, because I have learned to use vision to compensate for the loss of the vestibular function. Sometime it’s a little comical. When my son was young he loved vestibular stimulation. And there is a theme park up in New Hampshire geared towards little kids and they had this lovely antique gravity driven roller-coaster.  As roller coasters go, it’s very gentle, designed for little kids and their parents. I took my son on it once; he loved it, but I was white-knuckled and ready to heave everything in my stomach because I couldn’t deal with the motion of the roller coaster car.”
What was left of his vestibular function collapsed during final exams week in the spring quarter of his sophomore year in college. “What happened was I got this series of vertigo attacks and ultimately it landed me in the university’s teaching hospital. And they did a work up and pretty much concluded that it was the last gasp of the vestibular nerve on the left side. They followed me from then until I graduated, and when I graduated they gave me a referral to somebody at Mass. Eye and Ear. When I got to Mass. Eye and Ear this particular provider was no longer there and they had me see somebody else who apparently did not get a good grade in Bedside Manner 101, because when he was examining me the first thing he said to me was, ‘by all rights this should have been bilateral’.”

“The other thing that was damaged of course was my hearing. When they did neurological testing back after I recovered from the mumps encephalitis I had some bone conduction because it was my right ear picking up sound transmitted through my skull but nothing from my left ear. And so the other sort of comical thing is, if you make me try and rely on directionality of sound – I’m completely lost. If you hide in the bushes and call my name I’m going to have to use vision — I’m going to have to turn in a 360 degree circle looking for signs of motion visually.” Games like Marco Polo were not for Phil.


Phil considers himself lucky, on many levels. He points out that the encephalitis could have been much worse: “I think I was very lucky, given that I’d contracted mumps encephalitis. There was a child two years younger than me in my elementary school who died of chicken pox encephalitis.” And “if this guy that had flunked Bedside Manner 101 had been right, I would be deaf. Fortunately I have the hearing on my right side.”
He says: “The other thing I was lucky about – I gather mumps can result in sterility. But I am the proud father of two wonderful grown children. “
No, he does not think any of the childhood diseases are benign. “There was no measles vaccine, so I had measles. I think that’s when I hit my record for body temperature, I ran 105° (Fahrenheit) fever for a little while, so that wasn’t particularly fun. I hope I don’t get shingles because I had varicella. Might as well mention rubella too. Rubella was part of the picture too – I know a woman my age who is on the autism spectrum, but her autism had a known cause: her mother contracted rubella when she was pregnant with her.  She was a rubella baby.”
Lucky as he was, he’d rather not have had the disease to start with. “Needless to say that is something I would rather have not happen. This is one of the reasons I think the whole anti-vax movement is particularly irksome. I think it’s crazy to let these childhood diseases take their natural course.



Acknowledgements: I am very grateful to Phil for sharing his story and helping with the draft and to Alice Warning Wasney for comments on the draft.

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Four and a Half Years is not Enough: Neisseria Meningitides Takes a Child

It’s been years, but Nona (name altered to protect privacy) still remembers it
vividly. It was 2005. The clinic in Israel served mostly Ultra-Orthodox Jews, families
with multiple children living in very close quarters and hence very susceptible
for infections transferring from one to another. The child in question
was four and a half, and has been to the clinic only once before. “A cute kid,”
Nona says. “Pale face, I think on the tall and skinny side for a girl her age, dark long hair in  a ponytail.” That day, however, she was not doing well.

It was in the second half of June 2005. Nona was seeing a patient, and her secretary came in and told her there was a very sick looking little girl outside. Nona and her
patient understood the urgency and finished their session, and the child’s mother
wheeled her in in a stroller.

Nona says: “You know when a girl past the toddler stage is being brought in a stroller, it’s serious. The mother told me her daughter was fine until last night, when she developed a high fever and vomited a few times. Then she seemed to settle down and sleep, but this morning was hard to wake up. She put the little girl on the examining table and we undressed her. The girl was in a semicomatose state, she responded a bit to pain stimulus but not much else, her neck was stiff as a board, and I noticed some odd markings on her legs. It wasn’t the classic bleeding under the
skin you see in more established cases. Still, I knew immediately what it was.”

The markings, said Nona, looked like this or like this.

At a later stage, it probably developed into something like this:

Source: Public Health Image Library, Courtesy of CDC/Mr. Gust

Nona had seen a full-blown case as a student. It was very, very memorable. Nona
whispered to the nurse that they had a little girl with meningitis, probably
meningococcemia, and asked her to bring an IV set. She also told the secretary to call and ask for a mobile ICU unit and to write down the names of all the patients in the
waiting room. Nona knew they may have to put all the patients on antibiotics. In
the event, the instruction from the public health authority was that given the
short duration of the exposure, only the nurse, Nona herself and the little
girl’s family – including her mother, pregnant at the time –  needed the antibiotics.

She went back to her patient, and put in an IV. The little girl was “fully comatose by
then and made no protest at all to the painful stimulus.” The rash turned more
purple on the legs climbed up to chest level – although it had only been ten
minutes or less. Nona says: “I’d never seen ANY infectious disease progress
that fast.”

Nona went searching for the appropriate antibiotics, ceftriaxone. She explains that
it’s a “very broad-spectrum antibiotic. A good thing to give if you don’t know
what you’re dealing with for sure.” She couldn’t get them: on Tuesday, the
pharmacy was only open in the evening, and this was morning… and only the
pharmacist had the key. The Mobile ICU showed up; Nona showed the doctor the
rash and he understood immediately what was this was. Nona said “I asked if he
had any antibiotics for the way, I seemed to think he did but ultimately found
out the ambulances don’t carry it (or didn’t at the time).” Since that episode,
the doctors at the clinic bought privately their own supply of cefrtriaxone and
kept it in the resuscitation cart. “Luckily,” says Nona, “we never had to use
it again.”

The Mobile ICU took the little girl away. Later, Nona called the hospital’s PICU and talked to the chief. The Chief told her that the little girl arrived at the hospital intubated.

She’d lost consciousness before the arrival of the Mobile ICU, before she was taken away, but Nona explains that this suggests that her situation had continued to deteriorate in the ambulance, or that they put the tube in a s a precautionary measure, something often done for unconscious patients expected to be on life support. The ambulance called ahead, and a full team was waiting for the child as she arrived. She was given antibiotics immediately upon arrival. Since she was in such a bad condition, the diagnosis was based on her clinical signs: they did not wait for a lab culture.

The little girl “hung on in the PICU for 9 days without ever regaining consciousness.”

Then she died.

Meningococcal is a horrible disease, with a high rate of deaths and a high rate of complications; see also here. There’s a vaccine available against meningococcal, though it does not cover all the common strains. It is recommended for
teen-agers and college students, though it is not routinely recommended for
infants in the United States  (it is in Australia).

The National Meningitis Association summarizes:

“Meningococcal disease, sometimes called bacterial meningitis, is a potentially fatal bacterial infection that may cause death or disability within hours. However, it can be potentially prevented through vaccination.”

Would the vaccine have helped this little girl? We don’t know; it would depend which strain she had (and there’s always a slight risk of vaccine failure). But it can prevent other children from having the disease, with its dangers and complications.

For a long, long time, Nona felt guilty, on top of the pain and distress at losing the child. To some degree she still does, though she had since realized that she and her
colleagues did the best they could in the circumstances. She blamed herself for not
immediately giving antibiotics, not having the necessary antibiotic available, though eventually she realized the antibiotics in question was not standard issue for clinics, not something usually available, because it was so rarely needed. The child’s family did not blame or criticize them: they  “thanked us profusely”, and are still with the clinic. But she remembers, vividly, the little girl lost to the disease.

Acknowledgements: I’m grateful to Karen Ernst and Alice Warning Wasney for their help with the draft, and to Nona for sharing her story.

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Too Close for Comfort: Rahel’s Experience with Chicken Pox

It was a hard time for Pamela as it was. Her husband had just
died, and she found herself alone with four young children, three boys and a
girl. Her oldest, at six, had just started first grade. Her second son was in
Kinder Garten, her third was three, and her daughter was still a breastfed
baby, at seven months. The youngest two were home with her, and the focus on
them helped, though she was lost and upset, trying to find some normality in a
world turned upside down.
Baby Rahel was already sitting on her own and had just
started pulling herself to a standing position.
And then it started. Says Pamela: “One day my oldest came home acting a bit
‘off’. Later that evening, when I took his clothes off, I noticed a
blister under his arm and at first thought that his clothes had rubbed against
his skin. I have to add that my oldest is handicapped and has extremely
sensitive skin, so that was also a possibility. Anyway, the next morning he was
covered in blisters.”
The child’s fever shot up, “quite high”, Pamela said. During
that second day, her second son started to get sick, followed by her three-year-old the following day.
All of them suffered substantially, says Pamela: “[the eldest]
had blisters mostly on his torso and his fever went away after a few days, once
the blisters started to dry up. [her second son, five years old] had it bad,
the back of his knees was so covered he couldn´t even bend them and he also had
blisters on the inside of his eyelids. [her third son], three, had a very high
fever for several days and was covered from head to toe.”
At first Pamela thought the disease spared baby Rahel – “we got
lucky with her.” Pamela herself knew that a few years earlier, when her titers
were measured, she had high levels of antibodies; she believed breastfeeding
Rahel protected her against the chicken pox.
She was wrong. A few days after the boys were sick, as they were
healing, “I woke up in the middle of the night to her whimpering. When I turned
the light on, I was in shock: she was covered with blisters and had a really
high fever.”
“During the course of the day, she got more and more spots and
her fever got higher so we called our pediatrician . He came to the house (as
he usually did in very serious cases) to check on her and prescribed some
calamine lotion and something to bring the fever down a bit.”
The pediatrician was shocked. He was an experienced pediatrician – who took care of Pamela herself as a baby. He said that in his many years practicing, this was one of the
worst cases he had ever seen.
Rahel was not getting better. After a little while, says Pamela,
“there were more blisters on her than normal skin. It was awful, she had a
raging fever, was so weak she couldn’t even feed anymore and could only
whimper. Her eyes were red and light-sensitive, horrible.” The pediatrician,
asked to visit again, took one look at the baby and called an ambulance. Pamela and
Rahel were taken to the hospital; Rahel arrived with a fever of 41 degrees
Celsius, 105.8 Fahrenheit. They was immediately admitted to the isolation unit in
ICU, where Rahel was attached to monitored and an IV inserted into her arm. She
was given fluids and anti-viral medications and medication to reduce her fever.
Pamela was very, very frightened.
The pediatrician said it was the worst case he had seen in his
many years practicing. He asked permission to give Rahel a new drug that has
just come out, explaining that without something to help she would die anyway,
and that way, she at least had a chance. Rahel was not really conscious – but
Pamela was both scared and distressed. She says: “It was horror. After losing
my husband a month earlier, I thought, now I am losing my only daughter as
well.”
Pamela and Rahel spent four days in ICU, and then several more
days in the hospital. Recovery at home was long. Rahel, previously active and
already pulling herself to a standing position, was so weak she could hardly
lift her head. She had lost 15% of her body weight – a lot, for such a young
baby. The blisters left on her body covered her all over, including her diaper
area, kept getting infected and oozing, and had to be covered with
antibiotic ointment. It took many weeks for her to get anywhere near normal.
Pamela feels very strongly about vaccination. Having been
through such a traumatic experience, she cannot understand why a parent would
not vaccinate their child against chicken pox. The disease might be mild in many cases,
but it can kill (See, for example, here and here) or lead to seriouscomplications and suffering. The vaccine, on the other hand, is extremely safe (see also here), and although a child can still
get chicken pox after it, it is almost always a much milder version:
Meme provided courtesy of the Facebook page Refutations to Anti-Vaccine Memeshttps://www.facebook.com/photo.php?fbid=505923146144366&set=pb.414643305272351.-2207520000.1379638360.&type=3&theater  

Rates of shingles among vaccinated children are also
substantially lower than among unvaccinated children.
Pamela
is clear: if she could at the time, she would have vaccinated her children
against the disease. Her main reason for sharing her story is so that other
parents realize how dangerous chicken pox can be, and take precautions to
prevent their kids suffering through something like this. 

Acknowledgements: I’m grateful to Pamela for sharing her story and to Alice Warning Wasney and Clara Obscura for reading and commenting on my draft. All errors are, of course, my own. 

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A March of Diseases

Peter was  born in
1945. He has one older sister and one younger. He remembers his miserable
experience with both chicken pox and measles. He was lucky, he knows, not to
have any complications from either disease, but young as he was, he remembers
his experience with both as quite unpleasant.

Peter was not yet six when he had the chicken pox.  His older sister got it, and he got it a few
days after. His parents feared that the youngest, his two-year-old sister,
would also get it. Luckily, she did not. Peter says: “I think we were both had
the running sores at the same time. That was pretty miserable.”
Peter remembers being
“slathered with calamine lotion several times a day and having these big
pink splotches everywhere. Although it was standard treatment at the time, it
didn’t seem to help much.” He doesn’t remember how long he was sick for, but
“the temptation to scratch was so intense that for a few days I know I was
wearing my kiddie-size boxing gloves that I had gotten for Christmas the year
before.”  It was his parents’ idea, and
“they definitely kept me from scratching.”
His measles experience, at around ten years of age, was also
memorable, though he seemed to have had a mild case, since he does not remember
feeling particularly ill. He does vividly remember having to stay in a darkened
room and not being allowed to do anything at all. Any mental stimulation or
excitement was thought to be bad for a child with measles at that time. It was
summer, and he missed the Fourth of July fireworks, and playing with sparklers,
and was upset that he could hear his sisters enjoying themselves outside. An
avid reader, he was not allowed to read, and felt that deprivation keenly.
Two summers in a row, a little past his tenth birthday,
there were polio epidemics. They were not allowed to go to crowded public
places, including beaches, amusement parks, municipal swimming pools, even to
the movies. “It was basically stay-close-to-home time. We were worried to
death. At one point we were in a doctor’s waiting room and a kid came through
who had been exposed to someone who had active polio, and I had a few days of
worrying about that, though I now realize the risk was very small. That’s how
strong and pervasive the fear was before the Salk vaccine.”
He remembers seeing and reading about iron lungs, the iconic
symbol of polio. They were tubular metal tanks in which one lay, with only
one’s head sticking out. A tight seal around the neck isolated the tank from
room air pressure, and a piston decreased the air pressure inside, drawing air
into the paralyzed person’s lungs.
Later, as an adult, he got a close-up experience: “…I started
working for a med school, and … we had a few old iron lungs tucked in the back
of one hallway.  Before they were
disposed of we actually got a chance to see what it was like to be in one. It
was quite strange having the air go in and out with no effort on your part.
They even had a cough setting which would actually force you to cough by a rapid motion of the piston.”
Asked how it felt, he said: “I’ve never been particularly claustrophobic
(until the first time I had an MRI of my head) so I didn’t have that feeling,
but the seal around the neck was not terribly pleasant—then again, if you were
in one of those things you probably wouldn’t be able to scratch it anyway. But
the knowledge that this machine is breathing for you, even when you could
breathe on your own, that was a little strange. I don’t know if I can get my
head around what it would be like to have
to
breathe with that machine.”
In 2008, he mentions, the last person dependent on an iron lung in the United States died – not of her disease per se, but from a power
failure.
There were almost always children in every school Peter attended
that had legs in calipers (Americans call them braces). He vividly remembers a boy
who sat next to him in a class whose right arm was nothing but skin and bone
from polio. “I had a strange fascination with it; I’m sure he thought I was
extremely rude.”
A memory from a later age also remains with him: “When I was
in college, I went to a  mixer, …  and I saw this stunningly beautiful girl sitting
at a table. I went over and made a little chit-chat, asked her if she wanted to
dance and she said “No, I can’t.” I stupidly asked why, and she just kind of turned
away and waved me off, making a “go away” gesture with her hand.  Later in the evening I saw her leaving the
area where we had the mixer and she was walking with a pronounced limp. One of
her legs was just skin and bone. ”
While Peter did not have other vaccine preventable diseases, they were in the
background – whooping cough, mumps. He remembers mumps “was going around when I
was in my teens and my mother I recall being concerned that I would get it
because I’m the last male in my particular patriarchal line and I had ‘a
responsibility to carry on the family name.’ ”
In high school, there was a classmate who died of meningitis.
“It was early in the week, Monday or Tuesday, and in Latin class Miss Gardner
started talking about a girl who was absent, whom I didn’t know very well, and
the way she was talking—”it was meningitis, and it was very
quick”—and I was thinking “Wait, what? Someone died?” Yes,
someone in our Latin class died of meningitis over a weekend. I’m told that
because of the vaccine, most doctors these days have never seen a case of it.”
Peter also remembers having the flu as an adult. He says:
“it’s not a bad cold. It feels like you’ve been hit by a truck. If the air is
circulating in the room and your hair
moves it hurts. Just incredible hypersensitivity to any sort of touch to the
skin. Any effort at all would cause me to start sweating, and I could feel the
droplets flowing across my scalp. They
hurt.”
More recently, in 2009, Peter lost a Facebook friend to H1N1
flu. He describes her as a “very colorful woman; absolutely unforgettable.” To
protect her privacy, he asked not to disclose her name, but he said: “When she
was first taken sick, she kept going on — posting on Facebook — about how bad
she felt. Really, really bad. She was hospitalized and it was reported that
they were still trying to figure out what she had, and a few days later some family
was there and all of a sudden she sat bolt upright, stopped breathing, fell
back and she was gone; they couldn’t being her back. And it turns out that it
was H1N1 flu, verified by PCR testing.”
Peter says: “When the H1N1 flu vaccine first came out, one
of my Facebook friends asked our circle if we thought she should get the
vaccine. Despite the fact that that particular group leans strongly toward
“alternative medicine,” the discussion was fairly polite. Some of the usual
misinformation was shared, like “I got the flu from the vaccine; never again,”  and she said that she’d decided to take her
chances because the “natural” immunity was “better,” and I thought,
“To get the natural immunity you have to get sick as hell for two weeks; what
is wrong with you.” I don’t remember
whether I posted that or not; sometimes it’s best to just accept that people
won’t make the best choice despite your efforts.”
“Pro-vaccination?” Peter concludes.  “I’m as pro-vaccination as it gets.” Knowing what he knows,
seeing what he has seen, he does not understand how anyone could be otherwise.
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Carmela’s Ordeal

This blog post is
based on a chapter from the book Nettie: Tales of a Brooklyn Nana, by Peter
Franzese (
http://www.amazon.com/Nettie-Tales-Brooklyn-Peter-Franzese/dp/1420807633/ref=sr_1_2?ie=UTF8&qid=1378146197&sr=8-2&keywords=nettie+tales+of+a+brooklyn+nana).  Carmela
was the elder sister of his grandmother, Nettie.

Carmela Carrano was born on September 2, 1912, in a
six-family tenement house at 60 Kingsland Avenue in Brooklyn that was gas lit and where an
airless hallway bathroom was shared with another family. She was the 7th
of 11 children born to Maria Carrano between 1898-1925. The sisters – there
were five at the time – all slept together in a large bed. Carmela was severely
bow legged and had difficulty walking, but in spite of that difficulty and the
teasing other children subjected her to, she was a sweet, kind-hearted girl.
This is Carmela at
her confirmation with her confirmation sponsor. Her bow legs can be seen in the
picture. This picture is posted courtesy of Peter Michael Franzese.
Peter says: “She looked out for her younger sister, my
grandmother, and always worried if my grandmother had her school supplies and
would make sure my grandmother was ready for school.  She was also devoted to her mother, even
though she was small.” Peter’s grandmother was 2 years and 13 days younger than
Carmela, and the two were very close. Peter’s grandmother would walk to school
with Carmela every day; she was always sad when kids at school taunted Carmela
over her bowed legs. The kids would tease Carmela about her “bandy legs.”
But aside from her legs the kind, gentle child had no serious
health problems.
“Then,” says Peter, “on August 25, 1922, she had been playing
with a cousin all day, when she suddenly was stricken with high fevers and
lancing headaches. The neighborhood doctor was summoned to the house, where he
diagnosed her malady as viral meningitis.”
This far back, we don’t know if Carmela actually had viral
meningitis and if so what caused it, though the CDC lists a number of
vaccine preventable diseases among the causes, including mumps, “varicella-zoster virus (which also causes
chicken pox and shingles), measles, and influenza.”
Debbie Fearon,
a pediatrician from Australia, isn’t sure. “The death rate from viral meningitis
in otherwise healthy ten year olds is very low.” Debbie and other physicians
aren’t sure, on these facts, what Carmela actually had. But at any rate, the
little girl suffered horribly. Carmela lay in bed, her fever burning, her head splitting. The
house was quarantined – she was trapped in there, with her parents and seven
siblings and all the families in the tenement. There was nothing they could do
for her.
She screamed her agony.
For nine days, she screamed day and night, non-stop. Towards the end,
she was stricken blind. The other children, the other neighbors, never forgot
her screams. Peter says: “The thing that stayed with the children in the house
was the screams that seemed to never end over those 9 days.”
This picture of Carmela was put up in a place of honor in the apartment of her older sister, Rose. Picture posted courtesy of Peter Michael Franzese.
 
She died on September 2, 1922, the day of her tenth birthday, in
the same house in which she was born, via a midwife. Her wake took place in the
same apartment, too. Dressed in the same beautiful dress in the photo above,
she was laid in a casket. Peter remembers how “Her brother, Jimmy, filled the
pots to represent the tears their mother shed with water,” – a child’s effort
to express the deep, painful sorrow he saw his mother suffer through.
Peter describes her funeral procession: “Her casket was brought
to church in a white horse drawn carriage with white horses. Their heads were
bowed. As the horse drawn hearse was pulled from her home to church, the girls
who she had made confirmation with walked along side dressed in their white
dresses.
She is buried with her parents at St. John’s Cemetery in Middle
Village, Queens, NY.
It wasn’t unusual to lose a child at the time; Peter describes
the experience of his great-great-grandmother on the other side of the family:
“My great-great grandmother came to America in 1895 and between 1892 and 1914
she had I believe 12 kids…and buried 8 of them …some babies and some adults
– so, I guess, Maria Carrano was lucky that she only lost one child compared to
my great-great grandma Luppino.”
But Carmela’s death left a hole in her mother’s heart: “For 35
years her mother travelled [to Carmela’s grave], mostly by foot, to visit her
daughter. Just because she had 10 additional children, that one child was never
far from her mind.”
Others remembered Carmela too, her life and her death. Her
sisters never forgot; and her neighbors. Peter described how the last person
who knew Carmela – a child of a tenant in the building, who met Carmela in 1917
(and died in 2011, at the age of 101) – still remembered her 90 years after her
death and “spoke with such a vivid description of this little girl she had not
seen in 90 years”.
Carmela was remembered. Partly for her kindness, partly for
her painful, too early death, in an era when there was nothing to protect her
against disease and when no one could help her.Acknowledgments: I am grateful to Peter Michael Franzese for sharing this story, and to Melody Butler for bringing it to my attention. I am grateful to Alice Warning Wasney for reading the draft and to Debbie Fearon and other physician  friends, including Carolyn Bursle, Amy Eschinger, and Khedron Frank, for discussing Carmela’s illness and offering insights.

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A Fighter, not a Victim

To avoid the hot
1942 summer, Sandy’s family left their New York home and traveled to Moodus, Connecticut. Sandy’s stay lasted longer than
he planned. While in Connecticut, he was afflicted with polio. It started with
a headache and fever; shortly afterwards he was hospitalized. The health
officials would not let him travel back home, so his mom chose, for his stay,
the Connecticut hospital closest to New York. His parents visited, though they
were not allowed to have physical contact with him – they had to stay behind a
screen (as in the story told by Judith). Sandy stayed there for at least the full balance of the
summer and possibly longer, leaving the hospital on Labor Day. Labor Day became
a special occasion for the family, one celebrated again and again. 
Sandy remembered
clearly the hospital member – nurse or assistant, he never told his children –
who told him he would never walk again: “he told me I would never walk again; I
told him to get out of my room and never come back”.  Sandy lost his faith in health care
professionals after that.
Sandy proved that
man wrong. He left the hospital with his left calf muscle atrophied, but he not
only walked for most of his life, he played tennis three times a week.
“Stubborn,” says his son, Les. “he didn’t even let that slow him down. He
acknowledged the disease but he didn’t acknowledge any disability or handicap
from it until very, very late in life.”
Sandy attributes
his recovery in part to two things: the Sister Kenny Method under which the
muscles were moved around to prevent them from atrophying, and the fact that
his adored mother used to take him to the beach to walk on the sand barefoot,
which also, he thinks, strengthened his muscles. His family attributes it in
large measure to his strength of will.
Still, the shadow
of polio was with him, and not just in the atrophied calf (which did not slow
him down). He would never acknowledge a headache and always denied having them;
Les believes this was due to a headache being what started Sandy’s disease:
Sandy was unwilling to acknowledge the possibility of polio coming back. He did
not like things touching his feet, probably because of the memory of the
hospital bed, so his parents “built a little frame over the bed so that the
sheets could hang over the frame instead of touching his feet”.
Another memory
brought home to Les how deeply the polio affected his father: “When we went to
an Indian Guide Camp to Catalina one year – coincidentally the same camp I took
my own children to – I came down with a fever. 
And I did not know at the time, I had no idea until much later in life,
that that was a signal of the onset of polio, a high fever, but I did not know
that. I had a propensity for headaches and fever when I was a kid, but it was
always my mother who took care of me, but this was a father/son campout and I
remember they called the camp doctor and I was laying there in the little cabin
and the doctor came in and they stepped outside, they thought out of earshot,
but I remember my dad asking the doctor in a concerned voice, ‘it’s not polio’
– something to that effect and I realized he was so concerned about that.”
In spite of his
mistrust of healthcare professionals, and in spite of the recent Cutter Incident (see also here), in which several children died from an improperly
inactivated polio vaccine, Sandy made sure his children were vaccinated against
polio. The Cutter Incident made everyone at the time aware there was a risk;
but Sandy was also aware of the horrible risks on the other side.
Sandy built a
successful career practicing law, and Les and his brother worked with him and
learned from him.
And then Post-PolioSyndrome caught up with Sandy. As the new millennium started, he  was starting to weaken. He no longer played
tennis, and the cartilage in his good knee was gone. It’s not clear if this was
part of Post-Polio Syndrome (PPS) or just aging. Sandy started using a cane,
then a walker, and finally a wheel chair. His cane was the first aid he used,
and he got it from a 99 Cent store which sold it as a walking cane. Then one
day it broke, and he hit his back against a wall as he twisted to avoid
falling. Sandy believed it was the fall that triggered the PPS. He filed a
lawsuit against the 99 cents store and the makers of the cane, and his sons
helped him prepare it. Through his determination he ended with a $40,000
settlement.
By 2005, Sandy was
in a wheelchair. He hated it. For years he fought succumbing to polio, now he
could no longer do it. But he was a realist, so he bought a wheelchair before
July 4, 2005 and bought a van and remained mobile, alert and active. It was at
that time he met the only doctor he came to trust, Dr. Jacquelin Perry, who
worked on polio and post polio syndrome and recently died herself, in her 90s. Dr. Perry taught
both Les and Sandy a lot about post polio syndrome. Les describes her as a
“remarkable woman, who really was the one who identified post-polio as a late
onset symptom of polio survivors.” She is described as “the Grande Dame
of Orthopaedics” and admired forher revolutionary work in helping polio survivors and in relation to post-polio
syndrome. Sandy learned to
trust her judgment and respect her.
Even with post-polio
syndrome, Sandy demonstrated the stubbornness that helped him walk again after
his experience with polio. Les tells about how Sandy managed to be mobile for
his granddaughter’s graduation: “When Leah graduated it was a hot day and he
had to cross a long field and that guy like the energizer bunny just kept going
and going and he made it to the graduation, and she graduated in 2006. That was
just after, within a year of him getting that wheelchair he had to make it
across that lawn. And he did.”
Eventually
diagnosed with terminal cancer, Sandy was sent home in a hospice care. Les
tells how Sandy refused to be assisted onto the gurney that would take him
there: “two ambulance attendants came in with a gurney, and they were going to
roll him onto the gurney and roll him out, he refused. He said, I’m going to
stand up, and … that guy stood up barefoot on the hospital floor and then sat
on the gurney and said “now take me”.”
To the end,
he refused to be a victim.
Sandy died
in October 2011. Les and his family feel his absence, but also feel honored to
have known this strong, stubborn man who would not give in to the horrible
disease – but was very, very anxious to protect his children from it.
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The Price of Polio: A life in a Hospital

This post summarizes the story published by the BBC at: http://www.bbc.co.uk/news/magazine-23364127
Paulo
Henrique Machado was born in Brazil 45 years ago, in the middle of a big polio
outbreak. His mother died when he was only two days old. Paulo was hospitalized
as a baby, as part of a group of 11 children suffering from polio.
Paulo describes growing
up in the ward, moving around with a wheelchair and exploring his world – the
hospital. His social circle were his ward fellows.
The
doctors’ predictions for their future were grim: average life expectancy of
children in the ward was estimated at 10 years.
The BBC story quotes Machado’s nursing assistant, Ligia Marcia Fizeto, as saying:   
“It was very sad to see
all those children, all lying there immobilised in their beds, or with very
little movement.”  The children
were all in iron lungs. Paulo still uses an artificial respirator constantly.
Six of these children beat the
ten-year expectation. Paulo says: “There was me, Eliana, Pedrinho,
Anderson, Claudia, Luciana and Tania. They were here for a good length of time
too, more than 10 years.”
But in the 1990s his friends deteriorated and died, one by one. Paulo says: “It was
difficult … Each loss was like a dismembering, you
know, physical… like a mutilation,” he says. “Now, there’s just two
of us left – me and Eliana.”
Eliana is Eliana Zagui.
Together, Eliana and Paulo offer each other companionship and support. They
share a ward they personalized to their taste, with Eliana filling her side
with dolls and books and Paulo filling his side with film memorabilia and two
computers.
They argue constantly, and
Paulo describes the relationship as sibling-like. Most of their time is spent
in the hospital, though they have had trips outside, more recently, as
technological advances make the equipment necessary for a trip less heavy, and
allows for looser supervision.
When Paulo was 32, he and
Eliana went to the beach together for the first time. They both describe the
intense excitement and wonder of that visit, the first time they saw the sea.
They got to feel the sand, to touch the water. Eliana says: “You enjoy
these little moments, that many people take for granted. They don’t stop to
marvel like we do,”
Eliana is a published author,
overcoming her disability by writing and painting with her mouth. Paulo has
trained as a computer animator in the hospital.
Seeking to put their talents
together, Paulo orchestrated an online campaign to finance a 3D animated series
based on a book Eliana wrote. The series 
will be called “The Adventures of Leca and her Friends” and will be
based on Eliana’s real life. Says the BBC story:
“[Paulo] Machado
wanted to portray his life with Zagui – also known as Leca – and their friends.
“I wanted to make it attractive, not just colourful but full of the
mischievous games that kids get up to. I think my characters are realistic,
because they come from someone who is disabled. I know [exactly] what the
difficulties they face are,” he says.” 
Paulo
and Eliana’s achievements are inspiring and amazing, especially in the face of
the real limitations they overcame. But I cannot help feeling relieved that
most of the world’s children are protected against the price polio extracted
from these two extraordinary people and their friends. With luck, we can finish
the polio eradication project, vaccinating children to prevent this horrible disease, and other children will not have to suffer
similarly.   
Acknowledgements: I am grateful to Bradey Paschal and Xandy Gilmore for alerting me to this story, and to Xandy Gilmore and Alice Warning Wasney for comments on the draft. All errors are, of course, my own. 
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Measles’ Cost for Carol

 Carol and her eldest
daughter, provided by Carol with permission to use.  
Carol was born in 1961, before there was a vaccine available
against measles. She contracted measles the first time at the age of two, but
that was probably a mild illness, she says, because she has no memory of it and there are no family stories.  She was three and a half when she contracted
measles again, and this time it was serious. She was covered in a rash from top
to bottom, she hurt, she itched; and she vomited constantly. She thinks the
vomiting was why she had to be hospitalized. In spite of her young age, her
memories of the hospitalization are very clear: “I still remember the smell of
ether that was the typical hospital smell”, and since then, “any time a male
nurse or a male doctor came near me as a child I used to scream because they
were going to do something that hurt me.”
She tells of her experiences:
“I was not in a big bed, I was in a cot, I felt imprisoned.
I was isolated somewhat, I was kept in the corner of the ward; there must have
been about ten cots in this particular children’s ward, and there were three
empty cots between me and the next one that had a child in it. In order to have
a bath they actually had to carry me out because I couldn’t walk, I was in so
much pain and covered head to toe in this measles rash.  It’s probably my earliest memory, being
carried to the bath in the hospital and crying because I hurt so much, I was
itchy, and my eyes were sore.
“I vomited constantly for these three weeks. I was vomiting
so much – it was very, very brutal. I couldn’t even keep water down. [When she
arrived at the hospital] they tried to put an IV into me. It didn’t happen. And
so they managed to get me to suck ice chips. I think I managed to keep whatever
water I could get from the ice chips down. So they just kept an eye on me,” and
did not try again to insert the IV. “I still remember the smell of lunch time
and dinnertime coming, and it made me feel sick. Mom used to come up at
mealtimes to try to get me to eat something. I don’t know how many times mom
went home wearing my vomit.”
Traumatic as it was, it was not the vomiting that affected
the rest of Carol’s life: it was the sore eyes. 
Upon leaving the hospital, Carol’s eyesight was very bad, especially in
her left eye. She does not remember much, but she does remember double vision.
She also remembers one occasion when a teacher, at the young age of four and a
half, attacked her: “I was sitting in a desk in the front row, and we had to
copy this sentence that said ‘We went to…’ I can’t remember where we went to,
and I couldn’t see past the ‘We’ and then the ‘w’ ‘e’ from ‘Went’ – and I got
that written down and then everybody else had finished. And I was looking at the
blackboard and seeing this ‘we we’ and that’s what I’ve written, and the
teacher, she belittled me in front of the whole class. ‘We we, this is all you
can think of. Well, when are you going to the toilet?’ It was really quite
frightening. And I remember it quite clearly, I was four and a half, nearly
five.” Two weeks after that Carol had eye surgery: she was finally diagnosed
with a “visual impairment that required surgery”, an impairment directly resulting from the measles.  It was performed by a visiting specialist,
because they lived far from the city and the hospital was a small country
hospital about three hours from Sydney.  After the surgery her vision improved
somewhat, though she was still legally blind in her left eye.
“I had to wear a black patch over my eye for years and
glasses, we’d get those horrible cats-eye glasses for kids and they came in
pink or blue… childhood wasn’t real easy, shall we say. And nobody understood,
and nobody wanted to understand.”
She was never good in sports, because of that disability. She felt keenly for
other children harmed by diseases: “I went to school with a boy who contracted
polio pretty much through the birthing process, his mom had contracted polio a
week before he was born, he was virtually born with polio, and this was truly
the tail end of the polio epidemics that we had. He wore calipers, I lost contact
with him when I left primary school, I was 11, and he was two years younger. I
don’t know what happened to him.  I still
see this kid sitting on the sideline on sports days, not being able to do
anything because he had these iron calipers on his legs and those special
boots. These are vivid memories, probably because I had such a horrid time with
my vision.”
In her 30s, a specialist told her she should have gone to a
special school for the visually impaired, but she says – “the closest visually
impaired school was a long way, so to catch public transport, which wasn’t very
accessible, I would have had to have left home at 6 o’clock in the morning to
get to school, and catch three buses.”
Her vision problems caused her difficulty through adulthood,
although she learned to cope with most things. 
She describes a car accident: “I can drive a car, but I can’t drive a
car on mainland Europe or in the United States because I can’t really see the
traffic coming whereas it’s fine over here (Australia) because the traffic
comes out from the right. I did try driving once when I visited Holland and I
ended up losing the hubcaps from the passenger side wheels in the gutter.  I stopped to retrieve the destroyed hubcaps
and refused to drive after this experience. I was so frightened…”
Carol always has bad sensitivity in her left eye, her “bad
eye”, and has to almost close it in direct sunlight, unless she has very dark
glasses on. In the picture above you may note that Carol’s left eye is almost
closed.
Having suffered all her life from the after effects of
measles, she cannot understand why anyone would choose not to protect their
children against it. “Thank God I didn’t end up with SSPE (see also here, here and here).
I carry with me for the rest of my life what measles did. The side effects of
it. These diseases, there is no excuse for them to be around. Absolutely none.
There is no cure for these diseases per se. And they are preventable.”
Acknowledgments: I’m grateful to Carol for sharing her story and correcting my typos, and to Alice Warning Wasney for comments on the draft. 
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In Memory of Mary

This blog post was written by a gentleman who asked to remain anonymous, in memory of the distant cousin he knew only as a child. He is telling what happened as best as he can remember it, this far back.

Picture courtesy of the Public Health Library, available at: http://phil.cdc.gov/phil/details.asp

This isn’t a neat story, a precise one, nor is it, by its very nature, an accurate one. What I have to give are the memories of a 6 year old, as filtered through the mind of that boy at age 60+. There are no photographs, no stories, no newspaper articles. Just a rather smudged entry in a family bible reading January something, 1948, and a little clearer further down the page, August 11th, 1959.

But I remember Mary.

I was born in 1952, so I would have been perhaps 6 when I saw her the first time. I hadn’t heard of her before. Her family was related to mine, but distantly, and but for chance and the fact that we all lived in the same general area I’d never have met her. I knew nothing other than what mother told us the day before we drove down to visit the third time: You must be nice, you must be quiet. She’s very sick, she has polio.

Polio.

You don’t know what that word meant in the year 1958. It wasn’t a disease. It was the man walking past you with crutches, one leg shortened, that you couldn’t stare at because he had polio. It was the clerk with a withered arm that you mustn’t stare at, she had polio. The man down the street who couldn’t walk well, polio. I spoke with him a few times before I was told not to bother him (Now, of course, I know it’s because he wanted me to go to the store to buy him cigarettes. Don’t laugh. 1958? Cigarettes were a health food back then).

It was socially unacceptable and awkward to see polio. They hid from it in fear. I think people were afraid of the disease, and stigmatized those who had it.

She had polio, so they took her to the sanitarium.
Mom, is the sanitarium part of hell?
No, it’s where they treat people with polio.
Why do we have to go?
We need to visit her, she’s very lonely. And I want to talk to Jim and Margaret.

So we went, a very puzzled boy in the back seat. And we went into the hospital and down a corridor that smelled of disinfectant and bleach and into this room. There was an iron lung in this room; I think several, though only one really sticks out in my mind.

To a six year old, the machine was massive, huge. It towered over me and seemed to go on forever. It was a faded yellow and it made noises, a quiet hissing sound like a giant snake. And in it was Mary.

I remember her hair, it was cut short, almost like a boys. Her face was pale and gaunt, tired. I had to stand up on a stool to talk to her. (“Will the boy be ok?” “Oh yes, he’s been vaccinated.”) I remember her eyes, they were dull and sad. We spoke a bit, and she asked me about the weather. I told her what it was like outside and she brightened up a bit and smiled. She had, I think, a beautiful smile, but like so much here I don’t remember it that well.

I do remember the dreams I had that week, though. I dreamed of being chased by a yellow, hissing thing through dark woods, of not being able to move because my legs were frozen or missing. And the snake would get me and take me to the sanitarium.

We went over to Mary’s parents house after we were finished in the hospital. I remember that, her mother made fudge (I sometimes wonder if Mary had ever gotten any. I hope so, it was good fudge.).
And we talked, or rather my parents and Mary’s parents talked, and we visited with Mary’s siblings. Then we went home.

We went on at least two, possibly three more visits to Mary. Each time the stage was the same, I remember the big room with curtains and women in starched white presiding over the iron lungs (Ah, I DO remember. There were several in the room, perhaps four.). And Mary would be in her coffin and I would get up on my stool to talk to her. I never saw her outside of her iron lung. To this day I don’t know if she was in it for the entire day or if she was allowed out. I just don’t know…

I don’t remember much of what we talked about. I was, after all, six or seven, and Mary wasn’t that much older. I know we spoke of the weather and that I spoke of what her family was doing and what her cat was up to. It made her smile, and she seemed to enjoy my company, but I don’t remember much of it at all.

I have very clear memories of the last few words we spoke to each other. I got up and we spoke a couple of minutes, and then I asked her what she wanted. Her face clouded up and she said “Oh, nothing,” and tried to smile. I said “Ok,” and since it was her mother’s turn to talk, got down from my stool. But I heard what she said next. Oh yes, I heard it. I’ve never before told another living soul what she said.
She whispered, “I just want to die.” (I’m sure she didn’t want me to hear her.)

And, well, she did die. I am not sure when, but it was two months or more after our final visit. I remember the funeral; we went. I thought it was nice, she never had much at the sanitarium and at least there she had flowers and people talking about how brave she was and how sad it was.

There are so many things here I don’t know. I can’t even tell you honestly what she looked like, healthy or ill. There are no photographs of her that I can find. I can’t tell you where she lived before polio, or where her hospital was, or much else, really. Her life is a lost and vanished chapter, and I think that I may be the only one who remembers. But I do.

I remember Mary.

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