Chicken pox on child

When Chicken Pox is not just a Week Off School: Michael’s Story

Chicken pox on child

Picture taken from the Public Health Library.

This guest post is written by Michael, the author of the wonderful Skeptical Raptor blog. His description of himself can be found here: http://www.skepticalraptor.com/about.html

Sometimes history gives one perspective to understand the consequences of our actions. I grew up in a world with numerous infectious disease epidemics, in a time before there were large numbers of vaccines available. I was very young, so my memories were of my parents keeping me out of school or away from friends if I had something or they knew an epidemic was flying through the area. I had the polio and smallpox vaccines when I was young, so my parents stopped being worried about them. My father would tell me stories about polio epidemics during the summers of his youth in Upstate New York. I remember thinking that these stories were reminiscent of the same ones where he said that he walked uphill in the snow both ways to and from class. Until I ended up going to a university in Upstate New York, and I had to do that. So I guess his polio stories might have been true.

Then as I grew up, I realized that polio was dangerous. I had several classmates who had had contracted polio. One was a friend who had to walk to and from class with two canes. One time, one of her canes broke, and I literally carried her from school to my car, then drove her home, then carried her into her house. Lucky for me, she was small and petite, and I was tall and strong.

So, I saw the effects of polio directly as I grew up. I was of the age that was right on the cusp of massive immunizations with the Salk and Sabin vaccines against polio. But it took time for the immunizations to get to everyone, so there were a few who were debilitated by the disease. Kids just a few years older had a higher rate of classmates who were afflicted with the after-effects of paralytic polio. Many died. Many were hospital bound in iron lungs.

It was in this world that I contracted chickenpox when I was about 6 or 7 years old. It’s hard to remember all of the details, but I remember a few things. First, I itched like crazy, and my mother would yell if I tried to scratch it. But I also got to stay out of school, so that was fine. Because, when all is said and done, chickenpox isn’t that dangerous of a disease.

Except when it is.

According to the CDC, before the vaccine was available, about 4 million people got chickenpox each year in the United States. Of those, 10,600 of those people were hospitalized, and 100 to 150 died each year. Those statistics seem small, unless you happen to be one of those who were hospitalized.

Which I was.

Again, it’s hard to remember all the details, but I remember feeling OK. Kind of like getting a cold. However, two things happened at the same time that nearly put me in the category of those who died from the disease. The first thing that happened was one of the pox marks, on the back of my head, became seriously infected. At the same time, I got a serious brain swelling (at that time, no one was sure if they were independent events or one caused the other). Within hours, I was dizzy, and I kept passing out.

My father was a career military officer at the time, and was of the opinion that “whatever didn’t kill you made you stronger.” Doctors were useful if you had a gunshot wound. But in this case, I clearly remember the concern in my parents’ face as I was shipped off in an ambulance to the military hospital on base.

Now everything is fuzzy. I recall laying on my stomach, as several surgeons were inspecting my head talking in secret medical talk (this was the 60’s, so no one was asking for an MRI or CAT scan). Finally, I had to undergo surgery to remove the infection from the behind my ear and to relieve pressure on my brain. Only many years later did I find out how bad the surgery had gone. I was close to death, but I was very young, so all I remember is coming out of anesthesia, and asking the surgeons to show me what they cut out of my head. It was seriously gross, looked like an alien organism had attached itself to me.

I lived, which is obvious since I can write this article. All that remained was a 5 cm scar behind my ear. I don’t think about it much until a get a haircut and the barber kind of stares for a few second.

Of course, when I was in my early 40’s, I contracted shingles, which is a disease that is caused by the same exact virus that causes chickenpox. The evil virus hangs out in your nervous system, waiting for an opportune moment to strike again. Except shingles is an infection of the nerves, so it’s much more painful (think of pouring hot oil on your skin, and you’d be about 50% of the way to understanding the pain). It attacked me, oddly, in the same place as my scar from the chickenpox, although my doctors said it was coincidental. Ten years later, I made sure I got the shingles vaccine so I’d never experience that again.

For most kids chickenpox isn’t awful, although the subsequent shingles is horrible, so there’s that. But if I were 5 years old again, and the chickenpox vaccine were available, I’d be begging for it so that I would have avoided what I went through. Many decades later, I remember the fear in my parents, and the scary smells and screams in the hospital. These are images that no 7 year old kid should ever have in their memory.

Vaccines would have saved me from that.

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Aunt Maggie’s Life After Polio

This is a guest post from Ken Reibel, from Autism News Beat.

My Aunt Maggie contracted polio in 1943, at the age of 17. She was feeling fine, the story goes, when she boarded the bus home from summer camp. During the long ride, she complained that she didn’t feel well. Hours later, when the bus arrived in Detroit, Maggie had to be carried off. She was one of 12,450 cases of polio reported in the US that year.

Maggie lost the use of her legs, but escaped the dreaded iron lung. She lived a long life, married my dad’s brother, and gave me three really fun cousins. The family lived in a modest ranch home in a Detroit suburb. My uncle, an electrical engineer for ConEdison, built a wheelchair accessible house with no steps and wide doorways. She did the laundry, cooked great meals, celebrated the holidays, and even drove a car with the break and accelerator functions on the steering column.

Maggie seemed to savor the world from her wheelchair. She loved wild birds, and she was an amateur mineralogist. I loved it when she identified the rocks and pebbles I plopped on her lap. “Oh look at that!” she’d squeal in delight. “That’s kyanite! Where did you ever find this?” To an eight-year-old this was like a super power. Every rock, I learned, had a story, and my Aunt Maggie was the story teller.

Polio never defined Maggie. She wasn’t one to complain about her disability, but she didn’t take it lightly, either. I learned very early not to play in her wheelchair. “That’s not a toy,” she said. “And you don’t want to spend your life in a chair.” Polio was dreadful, a tragedy that, thankfully, would never stalk my generation, thanks to a great man named Salk.

Maggie passed away on a spring day, in her chair, while watching the wild birds in the feeder just outside her kitchen window. She couldn’t have planned it any better.

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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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Surviving the Iron Lung: a Story of Polio

Mary Virginia with her family. Heather’s father is the young boy on the right. Picture estimated to be from 1958. Provided courtesy of Heather, and used with her permission.

This story was told to me by Mary Virginia’s granddaughter, Heather. After seeing the picture of the communal iron lung at the top of the blog, Heather realized that this is what her grandmother spent several years in.

Mary Virginia was born in 1930, to a well-off family. Her childhood was happy enough, until the summer of 1937. Mary Virginia went to the neighborhood swimming pool, and had a lovely time. The next day, right before bed, she felt a little fuzzy. Her mom touched her forehead: the child was a little feverish, so her mother called the doctor.

Within hours, Mary Virginia could not control her lower body; within two days she was in an iron lung, in a hospital. She told her granddaughter that she shared a communal iron lung with four other children at a time (an “Emerson”, she called it).

There were dozens of children with polio in the hospital.

The turnover was high. Within six months, she and only two others were the only ones left from the original group she saw. In the communal iron lung turn over was fast for a grimmer reason: children died. Mary Virginia stopped counting her lost companions when she reached 24: she didn’t know how to count any higher than that. She had an aversion to the number 24 since then: it reminded her of the children she saw die.

For 3-4 years Mary Virginia lived in the iron lung. The nurses who treated her would move her arms and legs to maintain some kind of muscle. Her parents would visit her throughout the years she spent at the hospital, but although they were financially well off, the price and lengths of the train trip meant their visits were limited. Mary Virginia’s mother always felt guilty about that. Still, they saw Mary Virginia more often than most parents saw their kids. Heather, Mary Virginia’s granddaughter, remember that her grandmother told her that her own mother brought  “knitted hats, and little trinkets for the kids. And books, books were very important.”

After leaving the iron lung she spent additional years in the hospital. Many of the skills she had before she went in were lost and had to be relearned: she was back in diapers, and had to relearn to use a restroom, something that took years; she could no longer walk.

She left the hospital as a teenager who could barely walk. Heather says: “My Nana was warned she would never walk again, she proved them wrong – only used a cane in winter until she was much older and required a wheelchair for long distances or grocery shopping. She wore special shoes because polio caused blood flow to her pinky toes to be cut off. She has special inserts as foot muscle tone was affected. She showed me her braces once – from the bottom of her hip all the way down to her ankles. Doctors were amazed,  I remember her doctor she saw in Toronto, I must have been 8 or 9, saying she was a miracle, to be able to regain so much muscle tone after polio. She couldn’t walk far but made it around the house ok by the time I was around.”

“She wasn’t really welcome back to her town,” Says Heather. Getting her life back together was hard in other ways too. While in the hospital, Mary Virginia’s education was patchy. The hospital tried to provide education, but it was not equivalent to what a school would have given. Mary Virginia had to relearn to write (though she kept reading through her hospitalization). She was not allowed to go back to her regular school, and had tutors working with her. It must have been lonely. But she overcame this obstacle too: she got through high school, attended university and taught home economics – cooking and sewing – for years.

Her physical development was also impacted. She only grew to 4 feet 8 inches in height. Her doctors were also pessimistic about her ability to have children, and here too she beat the odds, having five children in six years, almost dying while birthing her youngest in an emergency C-section.

Mary Virginia worked hard to overcome the obstacles polio put in her way. As said above, she graduated from college and worked, teaching until the early 1980s. She and her husband, a lawyer, had five children. She cooked and cleaned every day, rejecting the help of housekeepers as part of her determination to be independent. Cooking was not easy for her, since her short stature – a memento from the polio – made reaching shelves hard, but she persisted, and taught her son and granddaughter how to cook. She gardened, and loved anything “outdoorsy”, says Heather, who remembers her as “strict but very loving.” She stayed friends with one of the women who was admitted into the hospital in the same year she was, someone who could identify with her experiences.

In 2002, Mary Virginia caught pneumonia. Heather says: “Her muscles were already so damaged from polio as a child that when she got sick essentially her lungs were too weak to work properly and she did not want to be intubated, she wanted to be awake until she couldn’t any longer.”

In June 2003, she died. Her family misses her keenly. But Mary Virginia built a good life for herself, in spite of obstacles, and Heather is grateful for having had this remarkably, brave woman in her life.

Acknowledgements: I am grateful to Heather for sharing her grandmother’s story and to Alice Warning Wasney for her comments and help with the draft.

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How Post Polio Syndrome Caught up with Mary

Polio is a disease of the past, and the vaccine is close to eliminating the threat worldwide. But for those who contracted the disease in the epidemics of the 1950’s,
a new condition – Post Polio Syndrome continues to affect its survivors.

Mary was two when she contracted polio, in 1954.

Mary as a child, at different ages. Picture provided by Mary, and posted with her permission.

She eloquently talks about her experience in a post on polioplace:

“When I was released from the hospital after about six weeks, I had to wear two long leg braces. This is a picture of me learning to walk with parallel bars my dad had a friend build for me. They were set up in the middle of our living room for two months. I am told I practiced a couple times a day. My two older sisters took full advantage of them. My sister, Marsha, is in the background doing flips on the bars! That probably made it more of a game for me.”

Mary with her braces. Picture provided by Mary, and posted with her permission.

“Crutches were the next phase, for another two months. Then one brace broke. So, we discovered that I didn’t need that one. I wore one brace and walked without crutches from then on.”

Mary refused to let polio slow her down. Her dad was a lawyer, her mom a homemaker and she had two older sisters. Mary went through the regular public schools, learned to swim, and rode a bicycle. She graduated from college, and met her husband, a loving and creative man. She worked as a Montessori teacher in preschool and elementary private schools, riding a bicycle to and from work!

Then post-polio syndrome caught up with her. Mary says: “After about five years, I was becoming overly fatigued and was having back and leg pain. I assumed I was just needing a break from teaching, so I found a job with the telephone company as a service representative. It was a desk job, that actually got more computerized as
the years went by, and I had good benefits. My husband stayed at home caring for our daughters.”

As her girls reached school age and were about to be out of the house for longer periods of time, Mary and her husband were looking forward to having two salaries again. But it was not to be. Mary’s condition was getting worse. Mary says:

“When I started again to have more pain and fatigue, one of my sisters who lived in St. Louis gave me some information about an organization there investigating other polio survivors with similar complaints. The group had been keeping vent users and those in in iron lungs connected since the polio outbreaks in the 50’s. This was the
1980’s. Apparently our bodies, damaged from the original polio, had compensated for our neuron losses and now were breaking down with overuse. It wasn’t polio again, just progressive nerve issues. So I found a clinic where I was diagnosed with Post Polio Syndrome and had to quit working on disability in 1988, when I was only 33 years old.”

Mary’s husband was having trouble finding a job as a blue-collar worker after all these years. And Mary herself, an active, creative woman, had no intention to be idle, motoric problems or not. Mary says: “Since my legs were originally affected, I could still do a lot of crafts with my hands. We made Native American crafts – gourds, beading, leather work and travelled to sell at Pow Wows, bike rallies, trade days, etc. I have always done needlework, quilting, and really loved loom beading. (It seems that the majority of polio survivors are Type A personalities – always busy somehow).” Things became more challenging as time went by: “Post Polio brought canes, crutches, manual wheelchair, electric scooter, and now a full time power wheelchair for me over the years. With each change in my physical condition, I had to psychologically deal with another loss.”

Mary more currently. Picture provided by Mary, and posted with her permission.

Her crafts kept her busy and engaged, but “now even my arms are weakening. So crafting is out now, too.”

She appreciates her husband’s devotion and constant loyalty, through change after change: “He married me with my leg brace, and stayed with me as PPS put me in a wheelchair. Some of us found very supportive spouses. Others, I have learned from my on line support groups, had spouses who left as soon as Post Polio began affecting them”.

In 2005, she lost this wonderful man who supported her through all the changes. But she was not alone: her younger daughter, just graduating from college, moved in to be with her, teaching Spanish in a nearby high school. Then, her daughter found a wheelchair accessible house, and the two moved in. Last year, that daughter married and moved out, though she and her new husband live nearby and Mary sees them often; but Mary’s older daughter, widowed and mother to a child, moved into the wheelchair accessible house to help Mary out. The family is very close.

Mary is not the type to brood: in spite of the limits her body sets, she stays active and finds things to do. She is active online in the polio survivors forum, she reads, she watches TV. She describes her online involvement: “The Internet has been a wonderful way for those of us who can’t physically go out much anymore to connect and feel part of society. Those of us who were more affected will give tips to the survivors who are now experiencing weakness and pain. As they need braces and wheelchairs and rest, we can give the support, if only through on line chats.”

Mary concludes: “There are approximately one million polio survivors in the US today. Many recovered with little obvious disability and are now needing braces and wheelchairs. It is important for people to be aware that polio continues. I guess I want people questioning vaccinations to be aware that the long-term effects of polio are life changing over and over again. There are some people who actually contracted polio from the vaccine (very rare, but it does happen) who still believe the vaccine is best for everyone to stop the spread of polio.”

Acknowledgements: I am grateful to Allison Hagood for introducing me to Mary, to Mary herself for sharing her story and helping prepare it, and to Alice Warning Wasney for commenting on a draft.
More information about post-polio can be found at: http://post-polio.org

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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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