Polio Blogs 2: Getting fitted for a new kind of life

Most of those infected never get seriously ill. They may feel unusually tired, stiff, and achy, but they recover quickly and assume they had a bout with the flu. When they return to school or work, the virus returns with them.

But in about 2 percent of all cases, the virus penetrates the central nervous system and attacks the neurons of the spinal cord and lower brain. Muscle weakness and varying degrees of paralysis result. If the nerves that control breathing are affected, the victim could die, or at best may require a breathing aid. As of the 1920s, that meant the infamous iron lung, the coffinlike cylinder that encased polio victims in metal, sometimes for life. [Excerpt from a PBS story about polio, found at http://www.pbs.org/wgbh/rxforsurvival/series/diseases/polio.html]

 

iron lung
A young patient in an iron lung.  Not understanding what these were for, at first I wanted to get inside one. [Photo from web stock]

Part 2.  (Part 1 is at https://risingoverthesmoke.com/2015/11/20/339/)

The time I was allotted back in my own home, with my mother and little brother — who had both come down with polio, too, but recovered well — and dad may have stretched endlessly to my five-year-old mind, but in reality it was only couple of weeks.  Well before Christmas the combined efforts of my mother (the public health nurse) and various doctors landed me in Boston’s well-known Children’s Hospital.  There I would remain for a good eight months, and there I would have to face up to the much altered body my wild young spirit inhabited.

I went in there with no idea at all of the whys and what-fors.  Keeping me in the dark has never been a wise strategy, and at that time it was about to  be a sizable stumbling block in my recovery.  Not for the last time, either.

After all, I had read from my mother’s nursing textbooks at the age of three, and had some general awareness of what could go wrong with a human body.  That doctors did things about that.

It was not pretty.  For me, born a fighter, the excruciating awareness, in this uncomfortable hospital, of legs that would no longer leap out of bed to rush me through discoveries of each fresh day came close to overwhelming me. I hadn’t been told that the point of being there was to learn how to function in the new reality.  My enlightenment unfolded at its own pace.  First off, my urge to apply every new thing I learned turned my mind on the people who believed that they were there to help me.

From their behavior, I formed the opinion that they were there to drive me crazy, occasionally hurting me.

It was too bad that so few of them tried the one thing that would have put me on their side — explaining why they were doing such bizarre things.  Most just cooed, sang mumbo jumbo songs, or muttered, “This won’t hurt a bit!”  And it did!

Before the struggles began, though, there came the suggestion that I, as well as other young children, were still alive, if not exactly kicking in our cold metal beds.  No matter what indignities some unseen virus had wrought on us.  An older boy named Sonny shot a paper airplane into my bed, and it contained a note.  Happily I’d learned to read long before, and so had no trouble making out the words:  “I love you”.

Carefully refolding it, I landed it back in Sonny’s bed with no more message than a scowl.  Who knew what things such as “loving you” meant in a place like this?

They chopped off my long hair with hardly a word, no doubt for their ease of washing and detangling.  Me, I missed my cowgirl braids.  After some words with my parents, I was grudgingly allowed to wear my own flannel nighties from home instead of the thin, well-worn hospital gowns.

Since this was a major epidemic the hospital staff had to drag old equipment out of who-knows-where to accommodate the overflow of patients.   I found myself in what I considered a baby crib, because it had high railings which nurses would pull up and down to suit themselves.  All the better to reach in and grab me.  Thick paint on it had flaked and peeled in its former service, a fact which I found disgusting.  It smelled of rust. How I wanted my own twin bed under the eaves at home, a lovely wood headboard and fresh smelling sheets!

That was one small pausing point in my adventure into self-discovery.

Next came Medical People Pushing Things.  Machines, mainly.  Some were no more than blood pressure equipment, while the one that irritated me  most (besides the blood drawing cart) was a shiny metal box with all sorts of dials and knobs.  A long, broad and crinkled tube came out of one side, with an enormous face mask on the end of it.  That unappealing article inevitably got shoved over my face and locked behind my protesting ears faster than I could shout, “Not again!”

I would be commanded to breathe into it as hard as I could while the dials measured the performance of my lungs.  Quickly learning the point at which the medicos would detach me, I saved us all a lot of time.  Even though I didn’t appreciate it a bit, what they were doing was making sure of the degree to which polio had affected my lungs.  There are several different types of polio, depending on which part of the central nervous system is attacked by the virus.  The result of these huff and puff tests was that my spinal column’s motor nerves had suffered, while my brainstem was left in peace.

Had that not been the case I would have had lifelong, severe breathing issues, died young, maybe very young.   My life might have been passed in one of the enormous cylindrical things I had seen at Haynes.  Iron lungs, in which solely the head of the patient is visible to the world.  While being shoved around Haynes on gurneys I at first thought these might be submarines of some kind.  I yearned to explore one.

At Children’s Hospital I decided to show them just how good my lungs were by shouting at every opportunity.

Those medical people had seen everything though, and were undoubtedly somewhat in shock themselves at the sheer scale of patients pouring into their care.  My shouts rarely got more than a quirked eyebrow and half hidden smile.

They weren’t taking ME, I, Emmy Lee, seriously.  Only my body.

Realizing finally that whatever had happened to my busy legs was seen as A Very Big Deal by all these total strangers in a very strange place, not having any idea of what would happen next, deprived of my loved ones most of the time by hospital rules, was not reassuring.

My feisty nature took a dark turn.

I went on a hunger strike that lasted for days.  When trays of food were brought I left them untouched.  When attendants began trying to feed me I shoved the trays to the floor and glared.  I did sip water when no one was looking, but that was it for a good long while.

I fed myself on the worried looks and whispered conversations of nurses and a doctor.  My parents were called in, but not so much to comfort me as to consult with the staff.  Some idiot came in with a “wonderful” burger in a bun, and pretended to eat it while grinning and saying how yummy it was.  So I grabbed it from her, took a bite, chewed it slightly and spat it at her.

To this day I do not eat burgers if I can help it.

They left me alone for a while in my pyrrhic victory.  It became hard to get the attention of a nurse when I needed something.  They all had more pressing things to do than fuss over a non-cooperating individual like me.

I was aware when young patients died.

During that time I invented an imaginary horse friend.  He was a wild, white mustang and his home was in empty places of the West, with flat mesas and towering mountains his background.  Straight out of my dad’s National Geographics.  Somehow I got ahold of paper and pencil and created a rough map of his range, complete with topo lines for elevations.  I noticed, abstractly, that though I had been learning to write with my right hand before I got sick, now I was drawing with my left.  It better held a pencil.

Dreaming of this mustang galloping far and wide, strong, free and fierce, gathering his herd and trumpeting his challenges, the time I passed in the not-eating state was pleasant enough.

I had named my gorgeous friend Misty, as Marguerite Henry had in her 1947 novel about a pony on Chincoteague.  Thereafter legions of lonely little girls…

Sometime during these detached days my Angel walked through the big doors in the front of Children’s Hospital for the first time in her grey student’s uniform, to start her new rotation.

Emmy, Children's Hospital, Boston, 1953-54 sm
Me around Christmas at Children’s Hospital, with a doll somebody sent me… I wanted a horse…

When the time was right there appeared at my bedside a fresh face, a young student nurse who was not a bit hardened or defeated by conditions around her.  “What do you want to eat, Emmy?” she asked me, without the slightest annoying anxiety.  At last, a fellow explorer, someone who understood that you needn’t waste time being irritated or demanding, you could just ask a kid a straight question!

Liking her immediately, I gazed into her eyes and responded, “A big bowl of vanilla ice cream with mustard all over it!”

Off she went, soon to return with my order.  Never before had I eaten anything half so delicious.  I begged for seconds, and the student brought me another big bowlful of creamy vanilla with golden mustard all over it.

There formed behind my new friend a ragged line of the nurses and other staff on duty that evening, nudging each other, watching as each spoonful vanished.

That good, intelligent and intuitive young woman, whose name I never knew, brought about the positive turn in my rehabilitation.  Whatever became of her later on, I have long remembered her with love.  She knew how to avoid stupid questions.

The next stage of my “imprisonment” at Children’s Hospital began what in time evolved into a life long project — adjusting to equipment that would allow me normal life with half a functioning body.

At the age of six by then, I felt ready for anything. Which was pretty good, considering what I would rapidly learn about polio’s impact on certain fellow patients.

 

 

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