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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What HPV Took: Stephanie’s story

Background:

I was born in Corpus Christi, Texas. My folks split when I was very young, and my mom moved to Arizona. I moved back and forth between her and my father in Texas.

My mother is the seventh generation of a ranching family, land rich and cash poor. My daddy was a great deal older, born in 1938. He never passed the 7th grade. My family was poor – what you would call trailer trash. But we are honest, hard working, and kind.

Illness is no stranger to my family. My grandmother had uterine, breast, and cervical cancer and beat them all in the years those were still a death sentence. She was a very brave lady, and also very kind.

I got married at 19, and moved to Washington State with him. His family had money and saw me as poor white trash.

It did not work out. He was cold and abusive. I nearly died of pancreatitis. He came to the hospital once while I was sick to ask where something was in the house and not another word. In August 2008 I left him with the clothes on my back and my kids, not wanting anything else.

To get even, he tricked me into losing my children.

I was homeless for a while. I surfed couches.

As I was packing my bags, I stumbled across the Myspace page of my old sweetheart, who is my current husband. During my first marriage, my mom told me he had come back for me, as he promised… but I was married and had moved away. I sent him a message. I got back a message, saying he still had the rings I gave him. We got back together…

My current husband’s father had a run down trailer/cabin that he let us stay at. We went door-to-door for work. When that failed I had to fish for my dinner and when that failed I starved, going from 243 pounds down to 137.

My current husband and I worked very hard and climbed slowly up the ladder. We have a rental house now, and food. Because of my health problems – the HPV related ones – I’ve been out of work for a year. That makes it harder. We struggle; we still have to let the house get cold to be able to pay the bill. My eyes are used to the dark because I hardly ever turn on a light. But we deal: I was raised by people with spines of steel. You can cry or get back on the horse. Either way, the work’s gotta get done.

But my husband is so well respected at work he has been promoted four times in three years, and beat out people with 20 years or more seniority. I’m very proud of him.

My HPV Story:

Stephanie’s meme is provided courtesy of Refutations to Anti-Vaccine Memes and Stephanie herself

In March 2007, while I was still married to my first husband, I got massive pancreatitis, and was hospitalized for nearly a month, almost died.

When I woke up in hospital, they told me: “You have to have surgery… and oh by the way you are pregnant.”

I survived the surgery and so did my baby. When they released me, I scheduled my first Ob/Gyn appointment for my pregnancy. The doctor did a Pap smear. It came back bad. I was HPV positive for both strain 16 and strain 18 (strains 16 and 18 are responsible for about 70% of cervical cancers –  – and are in the HPV vaccines). Since I knew I hadn’t been HPV positive with my first child, and I knew I’d been faithful, my husband had to fess up









 and admit that he had an affair.

My second child was born. At that point, the HPV was not directly affecting my life. The misconception is that HPV causes warts but that is not the case with types 18 and 16. They rarely if ever cause any outward symptoms.

Over the past six years, I’ve had many Pap smears, and all came back HPV positive, with abnormal cells showing. A good majority of women get rid of the virus. Not me.

In December 2013 I began having vaginal bleeding. Imagine the worst period ever times ten. And it didn’t quit except for a couple days here and there for three full months









.

I had another Pap and got an endometrial biopsy. That’s where they stick a sucky tube into your uterus, with no pain medications, and suck chunks of meat from inside it to send off for tests. It hurt. I thought I was dying









. Then they did a colposcopy. Basically the doc looks at your cervix with a big old microscope (doesn’t go inside you) and then if they see anything that looks like it might be cancer they use these little alligator mouth looking pincher things and bite chunks out to send off to be tested. But for this, they did numb me, so it wasn’t as bad as the endometrial biopsy.

I got the test results back, and the HPV was active, with abnormal cells actively growing. But my doctor said: “Oh, let’s just wait and see.”

I continued bleeding to the point that I was as white as a sheet and could hardly crawl out of bed in the morning. And then I sat down and started to research, and research, and research… my husband said I was obsessed.

At my 
next gynecologist appointment I dragged myself into her office, and said: “I’ve checked my family history back eight generations. On both sides three quarters of my female blood relatives had gynecological cancers. My grandmother alone had three. I am positive for both the really bad types of HPV (16 and 18). You keep finding abnormal cells, and other doctors have found them too for now going on six years. My HPV obviously is not and never will clear. Is it beyond the realm of understanding that no matter what I do or how vigilant I am, every road leads to a hysterectomy?









”

She told me:
“Given your bleeding, your pains, your family history, it seems like the wisest move to make…. and while we are in there we need to look for other things as well.”

I went home, I cried, and then made peace that I was lucky to have my two kids. My only regret is not being able to give my current husband a child of his own.

I scheduled the surgery the next day. I had it recently. I was in really bad pain after. Felt like the Rangers baseball team was having batting practice in my belly. 
I have four two-inch incisions all over my belly and they are all starting to bruise.  I’m taking Vicodin every four hours, and I can’t do anything for six weeks.

But do you know what hurts most?  A little before the actual surgery, my husband and I went out to eat at a restaurant. A group of happy families with kids and babies walked in. They were chatting and looked so perfectly content in life. Walking out to the car, my husband was very silent. He never had children of his own. Then, when we got in the car he said: “Well that really sucked, I’ve never been more depressed in my life… I will never have that.” He meant that he will never be able to have children of his own with me.

When you are reduced to death from cancer, or losing your womb… most women choose to live and suffer the emotional pain. Two shots, two darn shots could have made that moment in the car never happen.

Acknowledgements: I am very, very grateful to Stephanie for sharing her story, in her unique style. I am grateful to Liz Ditz and Alice Warning Wasney for editing comments, and to RtAVM for the meme.

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When Flu Killed Andrea

“Andrea was gorgeous,” says her cousin Jenni. She had long hair, and was extremely good looking. “She always said, when we were kids and then teenagers growing together that she was going to have a big impact on something in this world. She could feel it.” Jenni was two years younger than Andrea. She watched her
lovely cousin grow up, marry, and have two lovely children. “All her dreams came true,” says Jenni, and Andrea was gearing up to making a difference, doing something.

It was not to be. Andrea was only 24, in perfect health, her children three and seven, when she caught the flu. At first, it did not seem like a big deal. No one took it seriously.

Then Andrea felt worse. She followed her doctors’ instruction to the letter, and tried both medication and “natural stuff.” She got plenty of fluid and did her best to rest. But she was feeling worse, so she went to the hospital. She spent two or three days there, mostly getting an IV to be hydrated (Jenni is not sure what else was done for her). Then her doctors felt she was well enough to be sent home. So she was released from the hospital.

But “that flu attacked harshly that night.” She went to sleep, and never woke up. No one saw it coming.” Says Jenni. “She drowned in her sleep by pneumonia.”
The family was devastated. Jenni says: “It shook all our family. She was an only daughter and now two kids had no mama.”

“The flu seems harmless because it’s just so common,” she says. But it could kill. Jenni and her family learned this the hard way – as did 169 families of children, about half of which were healthy, the majority of which were unvaccinated, during the flu season of 2012-2013  and an unknown number of adults.

“Her kids and her parents all get flu shots now as they researched the risks, you never think it will happen to you.”

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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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Recommending New Zealand’s Collection of Stories: Piercing Memories

Many of this blog’s readers are hopefully familiar with the wonderful site Shotbyshot.org, collecting stories of survivors of diseases, mostly in the U.S.. Some of this blog’s interviewees also interviewed with shotbyshot.org – for example, Jan interviewed with them before posting on this blog; Renay, who shared Jesse’s story with our readers, then shared it with shotbyshot. So did Judith, here. Less familiar to you may be a New Zealand site also collecting stories, run by the Immunisation Advisory Centre, described as “a nationwide organisation based at the School of Population Health at The University of Auckland.” I found this site thanks to Madeleine Ware, who provided the link – thank you, Madeleine – and thought it would interest my readers.

The site collects stories of victims of vaccine preventable diseases, and has a collection of fascinating stories. One example is the story of Winifred, who at the age of 6 stepped on a nail and got tetanus. In a letter written shortly after the event to her grandmother, her mother describes the event. For the full version, read the story.

At some point, this happened:

“At 4pm the doctor rang us and said if we wanted to see her we must go at once because they were expecting the spasms to commence any time. We went straight away and she was as bright as a bee. She had had dozens of injections all day and a needle put in her arm and she was already stiffening. She made no attempt to move and spoke awkwardly but said she was ‘quite quite happy’ and had a nurse all to herself. As a matter of fact she had three. They took 8 hour shifts and hardly took their eyes off her. In addition the Sister was in there most of the day and the night nurse in and out. The doctor told me that the nurses had been wonderful.

“That night, at 11 pm the spasms suddenly began. They put her under anaesthetic and kept her under lightly all the time. When the spasms came on they gave her more which made them less violent. She had several in the next few hours and twitched continuously. The brain is like a hair trigger and the slightest stimulus will set off another spasm. If they had left her conscious she would have gone from one in to another and of course had worn herself out in no time.. As it was it was touch and go each time. I was told that when Doctor Butcher the son of the fire brigade man received an urgent call to the Children’s ward, the whole hospital held its breath till he came out again and said all was well.”

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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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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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