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. 

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 it’s 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: