No, Vaccine Preventable Diseases were not a Walk in the Park

Mike remembers his experiences with vaccine preventable diseases very, very vividly, and not favorably. His earliest memories were from mumps. He was only three, but he remembers being very, very ill. He was not hospitalized, but he was so ill that he had to lie on the couch for several days. His memories are vague – he was both young and sick – but he remembers being miserable. He also remembers one scene clearly: “my little sister was jealous of all the attention I was getting and came and smacked me across the face. When you got mumps, that’s a big ouch. She was two. She was toddling, and she just walked over to me and give me a swipe. It was not fun.”

Mike’s memories from having measles – at the age of five or six – are just as miserable. He says: “I remember being very very ill. Anyone who says the measles is not serious just had never had it. I was in bed in a dark room. My mother was bathing my eyes with milk. I was very, very ill with it.”It was somewhat later when he and his siblings – at that point there were four of them altogether – had chickenpox. Again, he remember it as “terrible” – very, very powerful urge to itch. And “when we couldn’t stop picking the spots we were told not to pick them or we would be scarred for life, but children, we scratched every itch.” They were treated with Calamine lotion – pink and soothing.

Mike also remember, at the age of six or seven – he is not sure – something that was originally thought to be meningitis, but may have been something else. He describes what happened: “I went on a bus trip to a local seaside resort, and we got there and I was too ill to get off the bus. I sat on the bus with my grandmother, and we sat there all day until it was time for the bus to go back home, and the next day I was in an isolation hospital. We have these hospitals which were part of the National Health Service, they were built separately and apart from all the other hospitals and when children got infectious diseases for which there was no cure they went there. They were originally built as sanatoria for TB victims or isolation hospitals for smallpox or cholera in the Victorian era. They were taken over by the NHS in 1948 and most were closed or repurposed over the next 50 year as these and other infectious diseases declined. And I was there and I remember tubercular injections, I’m not sure what it was, it might have been penicillin or something, regular injections every four or six hours. I vividly remember the doctor coming in to say I was going home tomorrow, and then the nurse came after him to give me my injection and I said ‘no, no more injections, I’m going home tomorrow.’ My poor little bottom was like a pin cushion.” Mike doubts it was meningitis, because he says: “I doubt if I had meningitis after sitting on a bus for a day if I’d be here to tell the tale.”

Mike says, “One disease remained a real fear when I was a child in the 1950s. Polio. We all knew about iron lungs and had seen children in callipers.”

Mike remember his childhood as a time when “children did get ill, they got ill on a regular basis, and not everybody did survive. I think I was one of the lucky ones.”

He does remember getting some vaccines – the pertussis, diphtheria, and tetanus vaccine, and the vaccine against Tuberculosis. He says: “I remember lining up to get it and everyone that came out pretended it really, really, really hurt to make the rest of us feel really scared. It hurt a little bit but when you came out you pretended it really, really hurt as well. Walking past this pale, frightened line of children moaning and staggering.” There were also smallpox and polio. “We liked the polio vaccine.” Says Mike. “It came on a sugar lump not a needle!”

Powerfully aware of the potential suffering caused by preventable diseases, Mike views the anti-vaccine movement as stemming, in part, from lack of knowledge about the risk those parents are taking. He says: “One of the problems I have with it is that the people who are campaigning against the vaccines have no experience with the diseases themselves. Unless, that is, those people who remember Measles, Mumps and Chickenpox as minor childhood ailments are remembering them in comparison to the really deadly diseases like smallpox, diphtheria and polio that were conquered by vaccination during the 50s and 60s.”

He himself knows better.

“When I became a parent and had my own children, it felt so good that I could take them to the doctor and have them vaccinated against these diseases and know they weren’t going to get them.”

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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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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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