Friday, November 14, 2014

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.

Monday, March 24, 2014

What HPV Took: Stephanie’s story


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. 

Saturday, November 30, 2013

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.”

Friday, November 29, 2013

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.”

Thursday, October 24, 2013

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.