The Price of Polio: A life in a Hospital

This post summarizes the story published by the BBC at: http://www.bbc.co.uk/news/magazine-23364127

Paulo Henrique Machado was born in Brazil 45 years ago, in the middle of a big polio outbreak. His mother died when he was only two days old. Paulo was hospitalized as a baby, as part of a group of 11 children suffering from polio. Paulo describes growing up in the ward, moving around with a wheelchair and exploring his world – the hospital. His social circle were his ward fellows.

The doctors’ predictions for their future were grim: average life expectancy of children in the ward was estimated at 10 years.

The BBC story quotes Machado’s nursing assistant, Ligia Marcia Fizeto, as saying:   

“It was very sad to see all those children, all lying there immobilised in their beds, or with very little movement.”  The children were all in iron lungs. Paulo still uses an artificial respirator constantly.

Six of these children beat the ten-year expectation. Paulo says: "There was me, Eliana, Pedrinho, Anderson, Claudia, Luciana and Tania. They were here for a good length of time too, more than 10 years."

But in the 1990s his friends deteriorated and died, one by one. Paulo says: "It was difficult ... Each loss was like a dismembering, you know, physical… like a mutilation," he says. "Now, there's just two of us left - me and Eliana."

Eliana is Eliana Zagui. Together, Eliana and Paulo offer each other companionship and support. They share a ward they personalized to their taste, with Eliana filling her side with dolls and books and Paulo filling his side with film memorabilia and two computers.

They argue constantly, and Paulo describes the relationship as sibling-like. Most of their time is spent in the hospital, though they have had trips outside, more recently, as technological advances make the equipment necessary for a trip less heavy, and allows for looser supervision.

When Paulo was 32, he and Eliana went to the beach together for the first time. They both describe the intense excitement and wonder of that visit, the first time they saw the sea. They got to feel the sand, to touch the water. Eliana says: "You enjoy these little moments, that many people take for granted. They don't stop to marvel like we do,"

Eliana is a published author, overcoming her disability by writing and painting with her mouth. Paulo has trained as a computer animator in the hospital.

Seeking to put their talents together, Paulo orchestrated an online campaign to finance a 3D animated series based on a book Eliana wrote. The series  will be called “The Adventures of Leca and her Friends” and will be based on Eliana’s real life. Says the BBC story:

“[Paulo] Machado wanted to portray his life with Zagui - also known as Leca - and their friends. "I wanted to make it attractive, not just colourful but full of the mischievous games that kids get up to. I think my characters are realistic, because they come from someone who is disabled. I know [exactly] what the difficulties they face are," he says.” 

Paulo and Eliana’s achievements are inspiring and amazing, especially in the face of the real limitations they overcame. But I cannot help feeling relieved that most of the world’s children are protected against the price polio extracted from these two extraordinary people and their friends. With luck, we can finish the polio eradication project, vaccinating children to prevent this horrible disease, and other children will not have to suffer similarly.   

Acknowledgements: I am grateful to Bradey Paschal and Xandy Gilmore for alerting me to this story, and to Xandy Gilmore and Alice Warning Wasney for comments on the draft. All errors are, of course, my own. 

Measles’ Cost for Carol

 Carol and her eldest daughter, provided by Carol with permission to use.  

Carol was born in 1961, before there was a vaccine available against measles. She contracted measles the first time at the age of two, but that was probably a mild illness, she says, because she has no memory of it and there are no family stories.  She was three and a half when she contracted measles again, and this time it was serious. She was covered in a rash from top to bottom, she hurt, she itched; and she vomited constantly. She thinks the vomiting was why she had to be hospitalized. In spite of her young age, her memories of the hospitalization are very clear: “I still remember the smell of ether that was the typical hospital smell”, and since then, “any time a male nurse or a male doctor came near me as a child I used to scream because they were going to do something that hurt me.”

She tells of her experiences:

“I was not in a big bed, I was in a cot, I felt imprisoned. I was isolated somewhat, I was kept in the corner of the ward; there must have been about ten cots in this particular children’s ward, and there were three empty cots between me and the next one that had a child in it. In order to have a bath they actually had to carry me out because I couldn’t walk, I was in so much pain and covered head to toe in this measles rash.  It’s probably my earliest memory, being carried to the bath in the hospital and crying because I hurt so much, I was itchy, and my eyes were sore.

“I vomited constantly for these three weeks. I was vomiting so much – it was very, very brutal. I couldn’t even keep water down. [When she arrived at the hospital] they tried to put an IV into me. It didn’t happen. And so they managed to get me to suck ice chips. I think I managed to keep whatever water I could get from the ice chips down. So they just kept an eye on me,” and did not try again to insert the IV. “I still remember the smell of lunch time and dinnertime coming, and it made me feel sick. Mom used to come up at mealtimes to try to get me to eat something. I don’t know how many times mom went home wearing my vomit.”

Traumatic as it was, it was not the vomiting that affected the rest of Carol’s life: it was the sore eyes.  Upon leaving the hospital, Carol’s eyesight was very bad, especially in her left eye. She does not remember much, but she does remember double vision. She also remembers one occasion when a teacher, at the young age of four and a half, attacked her: “I was sitting in a desk in the front row, and we had to copy this sentence that said ‘We went to…’ I can’t remember where we went to, and I couldn’t see past the ‘We’ and then the ‘w’ ‘e’ from ‘Went’ – and I got that written down and then everybody else had finished. And I was looking at the blackboard and seeing this ‘we we’ and that’s what I’ve written, and the teacher, she belittled me in front of the whole class. ‘We we, this is all you can think of. Well, when are you going to the toilet?’ It was really quite frightening. And I remember it quite clearly, I was four and a half, nearly five.” Two weeks after that Carol had eye surgery: she was finally diagnosed with a “visual impairment that required surgery”, an impairment directly resulting from the measles.  It was performed by a visiting specialist, because they lived far from the city and the hospital was a small country hospital about three hours from Sydney.  After the surgery her vision improved somewhat, though she was still legally blind in her left eye.

“I had to wear a black patch over my eye for years and glasses, we’d get those horrible cats-eye glasses for kids and they came in pink or blue… childhood wasn’t real easy, shall we say. And nobody understood, and nobody wanted to understand.”
She was never good in sports, because of that disability. She felt keenly for other children harmed by diseases: “I went to school with a boy who contracted polio pretty much through the birthing process, his mom had contracted polio a week before he was born, he was virtually born with polio, and this was truly the tail end of the polio epidemics that we had. He wore calipers, I lost contact with him when I left primary school, I was 11, and he was two years younger. I don’t know what happened to him.  I still see this kid sitting on the sideline on sports days, not being able to do anything because he had these iron calipers on his legs and those special boots. These are vivid memories, probably because I had such a horrid time with my vision.”

In her 30s, a specialist told her she should have gone to a special school for the visually impaired, but she says – “the closest visually impaired school was a long way, so to catch public transport, which wasn’t very accessible, I would have had to have left home at 6 o’clock in the morning to get to school, and catch three buses.”

Her vision problems caused her difficulty through adulthood, although she learned to cope with most things.  She describes a car accident: “I can drive a car, but I can’t drive a car on mainland Europe or in the United States because I can’t really see the traffic coming whereas it’s fine over here (Australia) because the traffic comes out from the right. I did try driving once when I visited Holland and I ended up losing the hubcaps from the passenger side wheels in the gutter.  I stopped to retrieve the destroyed hubcaps and refused to drive after this experience. I was so frightened…”

Carol always has bad sensitivity in her left eye, her “bad eye”, and has to almost close it in direct sunlight, unless she has very dark glasses on. In the picture above you may note that Carol’s left eye is almost closed.

Having suffered all her life from the after effects of measles, she cannot understand why anyone would choose not to protect their children against it. “Thank God I didn’t end up with SSPE (see also here, here and here). I carry with me for the rest of my life what measles did. The side effects of it. These diseases, there is no excuse for them to be around. Absolutely none. There is no cure for these diseases per se. And they are preventable.”

Acknowledgments: I'm grateful to Carol for sharing her story and correcting my typos, and to Alice Warning Wasney for comments on the draft. 

In Memory of Mary

This blog post was written by a gentleman who asked to remain anonymous, in memory of the distant cousin he knew only as a child. He is telling what happened as best as he can remember it, this far back.



Picture courtesy of the Public Health Library, available at: http://phil.cdc.gov/phil/details.asp

This isn't a neat story, a precise one, nor is it, by its very nature, an accurate one. What I have to give are the memories of a 6 year old, as filtered through the mind of that boy at age 60+. There are no photographs, no stories, no newspaper articles. Just a rather smudged entry in a family bible reading January something, 1948, and a little clearer further down the page, August 11th, 1959.

But I remember Mary.

I was born in 1952, so I would have been perhaps 6 when I saw her the first time. I hadn't heard of her before. Her family was related to mine, but distantly, and but for chance and the fact that we all lived in the same general area I'd never have met her. I knew nothing other than what mother told us the day before we drove down to visit the third time: You must be nice, you must be quiet. She's very sick, she has polio.

Polio.

You don't know what that word meant in the year 1958. It wasn't a disease. It was the man walking past you with crutches, one leg shortened, that you couldn't stare at because he had polio. It was the clerk with a withered arm that you mustn't stare at, she had polio. The man down the street who couldn't walk well, polio. I spoke with him a few times before I was told not to bother him (Now, of course, I know it's because he wanted me to go to the store to buy him cigarettes. Don't laugh. 1958? Cigarettes were a health food back then).

It was socially unacceptable and awkward to see polio. They hid from it in fear. I think people were afraid of the disease, and stigmatized those who had it.

She had polio, so they took her to the sanitarium.
Mom, is the sanitarium part of hell?
No, it's where they treat people with polio.
Why do we have to go?
We need to visit her, she's very lonely. And I want to talk to Jim and Margaret.

So we went, a very puzzled boy in the back seat. And we went into the hospital and down a corridor that smelled of disinfectant and bleach and into this room. There was an iron lung in this room; I think several, though only one really sticks out in my mind.

To a six year old, the machine was massive, huge. It towered over me and seemed to go on forever. It was a faded yellow and it made noises, a quiet hissing sound like a giant snake. And in it was Mary.

I remember her hair, it was cut short, almost like a boys. Her face was pale and gaunt, tired. I had to stand up on a stool to talk to her. ("Will the boy be ok?" "Oh yes, he's been vaccinated.") I remember her eyes, they were dull and sad. We spoke a bit, and she asked me about the weather. I told her what it was like outside and she brightened up a bit and smiled. She had, I think, a beautiful smile, but like so much here I don't remember it that well.

I do remember the dreams I had that week, though. I dreamed of being chased by a yellow, hissing thing through dark woods, of not being able to move because my legs were frozen or missing. And the snake would get me and take me to the sanitarium.

We went over to Mary's parents house after we were finished in the hospital. I remember that, her mother made fudge (I sometimes wonder if Mary had ever gotten any. I hope so, it was good fudge.).
And we talked, or rather my parents and Mary's parents talked, and we visited with Mary's siblings. Then we went home.

We went on at least two, possibly three more visits to Mary. Each time the stage was the same, I remember the big room with curtains and women in starched white presiding over the iron lungs (Ah, I DO remember. There were several in the room, perhaps four.). And Mary would be in her coffin and I would get up on my stool to talk to her. I never saw her outside of her iron lung. To this day I don't know if she was in it for the entire day or if she was allowed out. I just don't know...

I don't remember much of what we talked about. I was, after all, six or seven, and Mary wasn't that much older. I know we spoke of the weather and that I spoke of what her family was doing and what her cat was up to. It made her smile, and she seemed to enjoy my company, but I don't remember much of it at all.

I have very clear memories of the last few words we spoke to each other. I got up and we spoke a couple of minutes, and then I asked her what she wanted. Her face clouded up and she said "Oh, nothing," and tried to smile. I said "Ok," and since it was her mother's turn to talk, got down from my stool. But I heard what she said next. Oh yes, I heard it. I've never before told another living soul what she said.
She whispered, "I just want to die." (I'm sure she didn't want me to hear her.)

And, well, she did die. I am not sure when, but it was two months or more after our final visit. I remember the funeral; we went. I thought it was nice, she never had much at the sanitarium and at least there she had flowers and people talking about how brave she was and how sad it was.

There are so many things here I don't know. I can't even tell you honestly what she looked like, healthy or ill. There are no photographs of her that I can find. I can't tell you where she lived before polio, or where her hospital was, or much else, really. Her life is a lost and vanished chapter, and I think that I may be the only one who remembers. But I do.

I remember Mary.